Years ago, Lori and I went out to dinner to Joe's Crab Shack, when it still existed at the Utica Park Blvd. location (the one by Dave & Buster's, the building which is now a Red Ox Tavern). It was a warm evening, though not hot so we were wearing light jackets. I don't remember if it was spring or fall.
But it was a busy enough night to where we were waiting outside, along with other parties who were ahead of us. Among one of those parties was a little girl who was keeping herself busy while her adults were preoccupied. She was maybe 8, 10 years old. She caught our attention because she was indeed keeping herself occupied during the wait. She was examining the fixtures, the landscaping, and then was clearly wandering around, making up games in her own head.
I don't remember the exact circumstances anymore, but for some reason, she had a bucket. Maybe it contained crayons or other things, but either way, she had one. And at some point, she ended up wearing the bucket on her head while wandering around aimlessly, waiting for a table.
We thought that was awesome, because she did so without any sense of foolishness or attention-grabbing. She just did it because she wanted to. None of her adults paid her any heed.
Based on her actions, her body language, and the degree of self-assuredness she projected, we immediately knew this girl was a dork. And that is meant in the highest of complimentary ways. We chuckled and remarked to each other that one day, when we have kids, we would be blessed to have our own bucket-head girl.
That girl is Evie.
Evie is our bucket-head girl. She has zero qualms about looking or acting silly, because quite frankly, she doesn't know of such a thing. Granted, she's young enough to where she hasn't been broken down by the system, telling her "don't be so silly," "stop acting foolish." But maybe that's the point. To her, silly is fun. Foolish is a good thing, because it makes the adults in her life laugh.
Where is the harm in playing? What is to be negatively impacted if one is walking around with a bucket on one's head when one is harming no one, or disrupting another? Social norms are, of course, a complicated set of circumstances and rules. But when one is a child, why not?
Evie has put all sorts of objects on her head, and on our heads. She checks out her reflection, and smiles. She poses. She admires herself, wearing a basket on her head. She talks on a stick of cheese as if it was a cellphone. She has conversations with her stuffed animals.
She's two. She hasn't been told that she's being silly, or foolish.
In that, we adults could learn something. Within the social norms, we've, in one way or another, been told to stop playing.
To take the buckets off of our heads.
Stop having pretend conversations through inanimate objects.
That gap between the couch and the end-table is not a secret passage to a mysterious land.
There is no hidden world inside the bookshelf, so stop climbing in it.
Maybe this is why we're so angry with and mean to each other on the Internet. We've been told to stop playing so often in our real lives that out of envy, we want to make sure others don't have the fun we can't have. Because when they do, they don't seem to grasp the gravity of the horrors of reality.
But who says we have to? Why do we have this need to memorize the horrific details of every current event, whether criminal or merely salacious? Why are we not allowed to play?
What happened to our buckets?
Evie has hers (even if it's a cheap vinyl basket). I hope she never loses it.
Sunday, December 6, 2015
Wednesday, November 18, 2015
The Kids' Words
Evie:
- Naan, choo, swee, DOOHHH! = one, two, three, GO!
- Ee efchee ay chai chi = E F G, H I J
- Woh woh = any four-legged animal, regardless of whether it's a dog or not
- Appo = any round red fruit or vegetable, though color is sometimes optional
- Up down = pick me up or lift me higher
- Thit thit thit thit = Lucy, sit, before Dad puts your food bowl down (she's heard me tell Lucy to sit in this situation)
- Sesedo = Super Grover
- Sti = veggie stick
- Sheee = cheese
Henry
- *headbonk* = I love you
- AI!!! = See you later, I love you
- *grab hand, drag to spot in basement, squat down, pat floor* = Please lay out this quilt, then lie down on it so that I can lie on the floor next to you and play with my plastic ball.
- *wave off with hand as someone approaches him standing at his basketball* net, then look toward the person he wants to play with him* = No, I want Dad to play basketball with me.
Henry has more pantomimes and physical actions to indicate what he wants.
* By "basketball," I mean this thing:
Wednesday, September 30, 2015
Confirmation, Maybe?
A while after we got the official diagnosis for Henry's FXS, and we had to explain not just his behaviors, but delays in progress to the layperson, I started harboring thoughts in the back of my mind that I sometimes wished that Henry would just be officially diagnosed with autism, just so I could stop having to explain what FXS is, how it works, and what it means.
We had a consultation with a neurologist to look into Henry's sleep patterns, and while I won't get into the utterly ridiculous suggestions this doctor had to "resolve" Henry's sleep issues, part of the paperwork involved exactly what I wrote above in the first paragraph.
A review/examination to determine if Henry is on the ASD spectrum.
I think it's a foregone conclusion, actually. Since ASD is such a broad-ranging condition, no one person with ASD can be effectively compared to anyone else with ASD and expect to see similar results. Henry doesn't necessarily exhibit the "typical" characteristics of an autistic person, but that's because there's really nothing "typical" about autism.
What a lot of people may think when they hear "autistic" is Dustin Hoffman's Rainman. That's not a typical representation. Not every person with autism looks forward to fish sticks and Judge Wapner.
We hear qualifiers like "high functioning." That's pretty much a rationalization to say that a person with autism isn't nearly as Rainman-like, which may make those who are unfamiliar with this world a bit uncomfortable. It's a way to reason a degree of "normal" when such "normal" is not an option. It's how to determine how close to "normal" the person with autism is, so that it's not as uncomfortable to deal with.
To note: this is not meant as a criticism; I understand that the world of special-needs kids and adults can be rather scary to the general public, because it's a world of unfamiliarity. As a parallel illustration, while Lori has familiarity with Japanese culture, it was a complete world-turner when we all went to Japan a few years ago and experienced the train station at rush hour. Even going to the Outback Steakhouse that was down the street from our hotel and sitting at the bar to have a few beers was just slightly different than what we would experience here in the US.
Nevertheless, there is a recommendation to determine officially if Henry is on the spectrum. This, to me, is a mere formality and confirmation that Henry is indeed autistic. Of course, that also means that I have to work out how to describe it -- is he autistic, as a characteristic in the vein of being tall or half-Asian? Does he have autism, akin to having brown hair?
At the end of the day, I think that's something I'll have to work out later. But for now, it's just one step closer to pretty much having that one word to describe him without having to spend any additional sigh-filled effort in explaining the ins and outs of FXS.
While I do explain FXS whenever I can and at every opportunity, I read my audience and most times, I see that glazing of eyes when the attention is slipping and I'm about to lose them. Those are the times when I'd wished I could just say "he has autism," and be done with it, because despite the controversies surrounding Autism Speaks, it has at least put autism closer to the forefront of the social consciousness such that people understand that even if they don't know what it means to be autistic, it's at least something they've heard of to understand that when we say our child has autism, or that they see that we're sporting that colored-puzzle-piece merchandise, they understand that we have a long and hard road ahead of us, even if they don't know what it'll be like.
(and that was a hell of a run-on sentence, if I do say so myself)
Point is this: people have heard of autism and as such, can display more sensitivity and tolerance toward our children's behavior. I don't have to explain what it is, which can get exhausting (and thus making me feel like a terrible FXS advocate as a feedback loop). I had wished for a DX of autism just so I could stop explaining all that Henry is.
It appears I may be getting this wish.
Of course, just because it's on paper doesn't mean that my son is any different. The diagnosis doesn't change who he is or what he does. He's still that same goof who wants to be tickled until he collapses; who tries to walk from the car whenever we got to the store, but starts to get nervous when we enter the store until he feels secure in a cart; who loves Aldi's veggie sticks; who has incredible hand-eye coordination to be able to track a rolling ball no matter how big or small it is.
What it would do, though, is give us an out. Which was what I'd wished for earlier. And now that it's becoming a likely reality, I'm having second thoughts. Doubts. I don't think I want to let the explanation go with just "he's autistic."
I think he and the FXS community deserve more than just me blowing it off because it's inconvenient for me.
We had a consultation with a neurologist to look into Henry's sleep patterns, and while I won't get into the utterly ridiculous suggestions this doctor had to "resolve" Henry's sleep issues, part of the paperwork involved exactly what I wrote above in the first paragraph.
A review/examination to determine if Henry is on the ASD spectrum.
I think it's a foregone conclusion, actually. Since ASD is such a broad-ranging condition, no one person with ASD can be effectively compared to anyone else with ASD and expect to see similar results. Henry doesn't necessarily exhibit the "typical" characteristics of an autistic person, but that's because there's really nothing "typical" about autism.
What a lot of people may think when they hear "autistic" is Dustin Hoffman's Rainman. That's not a typical representation. Not every person with autism looks forward to fish sticks and Judge Wapner.
We hear qualifiers like "high functioning." That's pretty much a rationalization to say that a person with autism isn't nearly as Rainman-like, which may make those who are unfamiliar with this world a bit uncomfortable. It's a way to reason a degree of "normal" when such "normal" is not an option. It's how to determine how close to "normal" the person with autism is, so that it's not as uncomfortable to deal with.
To note: this is not meant as a criticism; I understand that the world of special-needs kids and adults can be rather scary to the general public, because it's a world of unfamiliarity. As a parallel illustration, while Lori has familiarity with Japanese culture, it was a complete world-turner when we all went to Japan a few years ago and experienced the train station at rush hour. Even going to the Outback Steakhouse that was down the street from our hotel and sitting at the bar to have a few beers was just slightly different than what we would experience here in the US.
Nevertheless, there is a recommendation to determine officially if Henry is on the spectrum. This, to me, is a mere formality and confirmation that Henry is indeed autistic. Of course, that also means that I have to work out how to describe it -- is he autistic, as a characteristic in the vein of being tall or half-Asian? Does he have autism, akin to having brown hair?
At the end of the day, I think that's something I'll have to work out later. But for now, it's just one step closer to pretty much having that one word to describe him without having to spend any additional sigh-filled effort in explaining the ins and outs of FXS.
While I do explain FXS whenever I can and at every opportunity, I read my audience and most times, I see that glazing of eyes when the attention is slipping and I'm about to lose them. Those are the times when I'd wished I could just say "he has autism," and be done with it, because despite the controversies surrounding Autism Speaks, it has at least put autism closer to the forefront of the social consciousness such that people understand that even if they don't know what it means to be autistic, it's at least something they've heard of to understand that when we say our child has autism, or that they see that we're sporting that colored-puzzle-piece merchandise, they understand that we have a long and hard road ahead of us, even if they don't know what it'll be like.
(and that was a hell of a run-on sentence, if I do say so myself)
Point is this: people have heard of autism and as such, can display more sensitivity and tolerance toward our children's behavior. I don't have to explain what it is, which can get exhausting (and thus making me feel like a terrible FXS advocate as a feedback loop). I had wished for a DX of autism just so I could stop explaining all that Henry is.
It appears I may be getting this wish.
Of course, just because it's on paper doesn't mean that my son is any different. The diagnosis doesn't change who he is or what he does. He's still that same goof who wants to be tickled until he collapses; who tries to walk from the car whenever we got to the store, but starts to get nervous when we enter the store until he feels secure in a cart; who loves Aldi's veggie sticks; who has incredible hand-eye coordination to be able to track a rolling ball no matter how big or small it is.
What it would do, though, is give us an out. Which was what I'd wished for earlier. And now that it's becoming a likely reality, I'm having second thoughts. Doubts. I don't think I want to let the explanation go with just "he's autistic."
I think he and the FXS community deserve more than just me blowing it off because it's inconvenient for me.
Friday, September 25, 2015
The Voice Inside
At almost 2, Evie's vocabulary continues to grow slowly. She happily babbles to herself in what sounds like words she's making up, even if they make no sense to adults. There are variations in intonation, enunciation, and definite repeated sounds that might as well be words, even if we don't know what they mean. She also has a few adult-perceptible words, like "appo," "shee," "awdun," and "whoa whoa."
(Apple, cheese, all done, and animals that might as well all be dogs)
I see also that her patience is sometimes a hindrance to using words. She's lately dropped the "awdun," because she just wants out, dammit. She's said "up" on a few occasions, but she insists more with just arms raised. And she's learned how to throw a fit when she doesn't get what she wants or is told "no."
I want to hear what's going on Henry's head.
When the bus got home yesterday, I went down the driveway to pick him up. I saw his face peeking out of the window of his seat, split into his wide, toothy grin where his eyes just disappear into slits. The bus aide helped him to the stairs, and he squealed with glee. As soon as he was in my arms, he leaned in for a head bonk (it's what we do). He didn't even give me a chance to say good-bye to the driver or the aide.
As we made our way up the driveway, I put him down so he could walk the rest of the way. He excitedly scampered toward the door, and waited with barely restrained happiness for me to open it. He clambered up the steps with his hand in mine, and announced his return with his usual "AHHH!!" He ran to the living room to play with his toys, shoes still on, and barely an acknowledgement of Mom or Obaa-chan.
Later, when my mother was gearing up to take the kids for their afternoon walk, she got the brand new double-stroller we got unfolded, and we saw Henry's face in the window of the screen door. With his face-splitting grin, he began excitedly hopping up and down.
Henry was the embodiment of pure joy at that moment.
Once seated and belted in, he was just babbling with happiness. But unlike Evie's babbling, Henry's babbling is just noise and syllables, no real discernible words or word-like sounds.
I want so desperately to listen to what's going on in his head and understand it.
This played out later on at dinner when he was upset. But upset about what, we don't know. He was clearly frustrated that we weren't clued in on what he wanted, which then turned into a negative feedback loop. He got more upset that we couldn't fix the problem, but we didn't know what the problem was, so he kept getting more upset, which then made us frustrated and helpless.
We want so desperately to hear what's in his head.
I know he loves us and knows we're his safety net. His teachers and even bus driver say that he says "mama" as an actual word rather than as a noise, and that it seems like a typical emotional safety blanket that kids this age use. They asked Lori if she ever gets sick of hearing it.
I imagine that Lori's heart broke a little at that moment, because we don't hear it at home at all. They were surprised by that. What we hear is the nonsensical "mamamamamamamamamamama," which is more like lip or mouth exercise than actual intent to say "mama." The only time Lori heard Henry say "mama" and mean it was when it was in absolute terror during the failed sleep study, when he was screaming and shrieking to be saved.
We want to hear what is in Henry's head because this means that he's assimilating what he's hearing. It's just not coming back out after processing.
I'm going to take a detour for a moment, but it's in the context of an analogy as only my geek-nerd self could do in order to make a point.
In the core of a star, the chemical and physical processes result in photons. Those photons are what result in what we call "light." Light is mathematically and theoretically (in a scientific sense) composed of photons (which makes the whole idea of a "photon torpedo" from Star Trek a little silly at first glance...what are we going to do, shine flashlights at the Klingon fleet?! I digress.....). A photon is calculated to take about a million years or so following its generation in the core of the star to escape to the surface, which then takes about 8 minutes to travel to Earth in the form of visible light.
The reason it takes so long for a single photon to escape the interior of a star is because of the utter chaos of physics that occurs in a star. Energy and gravity play havoc on the path of that photon, so it gets bounced around in its journey within that star. And considering the mind-numbingly insane sheer size of a star, even one as small as our own yellow sun (yes, it's a smaller one, on a cosmic scale), can make the journey of a single photon a really long one.
This is how I imagine language to be in Henry's head. He has some words and others are developing. We know this because he understands more than what he speaks. He comprehends. Not just tone of voice, but the actual words. He can differentiate meanings even in different languages (English and Japanese). It's just that they're not returned outward from within his own stellar core...or at the very least, they're on a very long journey.
I just hope I don't have to wait a million years and eight minutes to hear them. I want to know what's going on in my boy's head, because I imagine he's got a lot of interesting things to say....if only he could.
(Apple, cheese, all done, and animals that might as well all be dogs)
I see also that her patience is sometimes a hindrance to using words. She's lately dropped the "awdun," because she just wants out, dammit. She's said "up" on a few occasions, but she insists more with just arms raised. And she's learned how to throw a fit when she doesn't get what she wants or is told "no."
I want to hear what's going on Henry's head.
When the bus got home yesterday, I went down the driveway to pick him up. I saw his face peeking out of the window of his seat, split into his wide, toothy grin where his eyes just disappear into slits. The bus aide helped him to the stairs, and he squealed with glee. As soon as he was in my arms, he leaned in for a head bonk (it's what we do). He didn't even give me a chance to say good-bye to the driver or the aide.
As we made our way up the driveway, I put him down so he could walk the rest of the way. He excitedly scampered toward the door, and waited with barely restrained happiness for me to open it. He clambered up the steps with his hand in mine, and announced his return with his usual "AHHH!!" He ran to the living room to play with his toys, shoes still on, and barely an acknowledgement of Mom or Obaa-chan.
Later, when my mother was gearing up to take the kids for their afternoon walk, she got the brand new double-stroller we got unfolded, and we saw Henry's face in the window of the screen door. With his face-splitting grin, he began excitedly hopping up and down.
Henry was the embodiment of pure joy at that moment.
Once seated and belted in, he was just babbling with happiness. But unlike Evie's babbling, Henry's babbling is just noise and syllables, no real discernible words or word-like sounds.
I want so desperately to listen to what's going on in his head and understand it.
This played out later on at dinner when he was upset. But upset about what, we don't know. He was clearly frustrated that we weren't clued in on what he wanted, which then turned into a negative feedback loop. He got more upset that we couldn't fix the problem, but we didn't know what the problem was, so he kept getting more upset, which then made us frustrated and helpless.
We want so desperately to hear what's in his head.
I know he loves us and knows we're his safety net. His teachers and even bus driver say that he says "mama" as an actual word rather than as a noise, and that it seems like a typical emotional safety blanket that kids this age use. They asked Lori if she ever gets sick of hearing it.
I imagine that Lori's heart broke a little at that moment, because we don't hear it at home at all. They were surprised by that. What we hear is the nonsensical "mamamamamamamamamamama," which is more like lip or mouth exercise than actual intent to say "mama." The only time Lori heard Henry say "mama" and mean it was when it was in absolute terror during the failed sleep study, when he was screaming and shrieking to be saved.
We want to hear what is in Henry's head because this means that he's assimilating what he's hearing. It's just not coming back out after processing.
I'm going to take a detour for a moment, but it's in the context of an analogy as only my geek-nerd self could do in order to make a point.
In the core of a star, the chemical and physical processes result in photons. Those photons are what result in what we call "light." Light is mathematically and theoretically (in a scientific sense) composed of photons (which makes the whole idea of a "photon torpedo" from Star Trek a little silly at first glance...what are we going to do, shine flashlights at the Klingon fleet?! I digress.....). A photon is calculated to take about a million years or so following its generation in the core of the star to escape to the surface, which then takes about 8 minutes to travel to Earth in the form of visible light.
The reason it takes so long for a single photon to escape the interior of a star is because of the utter chaos of physics that occurs in a star. Energy and gravity play havoc on the path of that photon, so it gets bounced around in its journey within that star. And considering the mind-numbingly insane sheer size of a star, even one as small as our own yellow sun (yes, it's a smaller one, on a cosmic scale), can make the journey of a single photon a really long one.
This is how I imagine language to be in Henry's head. He has some words and others are developing. We know this because he understands more than what he speaks. He comprehends. Not just tone of voice, but the actual words. He can differentiate meanings even in different languages (English and Japanese). It's just that they're not returned outward from within his own stellar core...or at the very least, they're on a very long journey.
I just hope I don't have to wait a million years and eight minutes to hear them. I want to know what's going on in my boy's head, because I imagine he's got a lot of interesting things to say....if only he could.
Monday, August 17, 2015
See Whoa Whoa
Henry's situation has set the bar of expectations rather low for Evie, which I've mentioned before as being both a good and bad thing in my other posts. So the fact that she's pointing at objects and clearly having conversations that only make sense to her rather than just meaningless babbling noises is significant, but also new territory.
While the words and sounds she's using are meaningless to us, they clearly have some sort of definition and structure in her mind because of how specifically she's using them. So in other words, she's learning to speak as a typical child.
Our hearts are swelling at this prospect.
She has a few words and phrases now, and it began a while ago with her learning how to sign "more," and use it properly in context. She uses that one interchangeably between "more" and "again," but I suppose the intent is still the same.
When she hears "peekaboo," she responds with "I see...."
When she sees (and wants) either an apple or tomato, she says "appo" (she doesn't actually want to eat it. She just wants to play with one, which makes me fearful of one day walking into a room covered in squashed tomatoes).
Occasionally, when she wants out of the high chair or bathtub, she says "awdun."
And the one that kills us is one that I just managed to interpret, although she's been saying it for at least a week. She would say something that sounded like "see whoa whoa." We only caught the "see" part, so we figured it was just her exploring various ways to say "I see it."
No, she's actually referring to dogs. And here's how I made that connection.
I just happened to notice coincidentally that she was including the "whoa whoa" consistently after "see," but not all the time. So then I was curious as to what the difference was, and then it became clear.
Lucy.
Lucy was the common connection. Which also explains why she would say "see whoa whoa" when my mother would take the kids out for walks and they pass by the house that owns a boxer who constantly runs up and down the fence, barking.
Evie is associating Lucy (the "see" part) with barking ("whoa whoa"), because that's all Lucy ever does.
"See whoa whoa" is Evie's word for dogs, because of Lucy.
Evie has words.
While the words and sounds she's using are meaningless to us, they clearly have some sort of definition and structure in her mind because of how specifically she's using them. So in other words, she's learning to speak as a typical child.
Our hearts are swelling at this prospect.
She has a few words and phrases now, and it began a while ago with her learning how to sign "more," and use it properly in context. She uses that one interchangeably between "more" and "again," but I suppose the intent is still the same.
When she hears "peekaboo," she responds with "I see...."
When she sees (and wants) either an apple or tomato, she says "appo" (she doesn't actually want to eat it. She just wants to play with one, which makes me fearful of one day walking into a room covered in squashed tomatoes).
Occasionally, when she wants out of the high chair or bathtub, she says "awdun."
And the one that kills us is one that I just managed to interpret, although she's been saying it for at least a week. She would say something that sounded like "see whoa whoa." We only caught the "see" part, so we figured it was just her exploring various ways to say "I see it."
No, she's actually referring to dogs. And here's how I made that connection.
I just happened to notice coincidentally that she was including the "whoa whoa" consistently after "see," but not all the time. So then I was curious as to what the difference was, and then it became clear.
Lucy.
Lucy was the common connection. Which also explains why she would say "see whoa whoa" when my mother would take the kids out for walks and they pass by the house that owns a boxer who constantly runs up and down the fence, barking.
Evie is associating Lucy (the "see" part) with barking ("whoa whoa"), because that's all Lucy ever does.
"See whoa whoa" is Evie's word for dogs, because of Lucy.
Evie has words.
Thursday, July 9, 2015
Street Smarts
A short one.
Henry was taken to see a neurologist a while ago in the hopes of figuring out why he's so awful at sleeping, whether it's in going to sleep or staying asleep. Right now, we dose him with melatonin so that he'll fall asleep within a half-hour; before the melatonin, it was a nightly battle of 1½ to 2 hours to get him settled down enough to fall asleep.
Every. Night.
The reason: he was just hyper and could not calm down. We got a suggestion from our FX support group members that a common manifestation for kids with FXS is a non-stop production of cortisol, which puts them physically in a constant fight-or-flight mode. To combat that, we were given the suggestion of giving him melatonin supplements to counteract the overproduction of cortisol.
The first night we gave it to him was a miracle. He went to sleep within a half hour, and we haven't looked back since. A bottle of melatonin liquid is a staple now, and we've come dangerously close to running out a few times. That meant dropping everything and going to buy more, because, like beer, we shall not run out!
The neurologist was unable to examine him because, well, as anyone who knows Henry knows, he is not comfortable around strangers. And it's magnified when he's in a medical facility, because as far as he's concerned, only Bad Things have happened at medical facilities. The neurologist recommended we submit him to a sleep study through Children's Hospital.
Okay, fine.
Tonight was his appointment, and tonight was the night when the inner beast was unleashed.
Since I had class tonight, Lori was to take him in just before bedtime and spend the night in the observation lab. Henry apparently went Incredible Hulk. Because what the neurologist failed to tell us was that the study required all kinds of sensors and wires to be stuck on, around, and even in him (up his nose).
Just hearing that, I could tell you that it was not going to happen. He reacts to hair cuts like we're killing him. It took all of my strength and dexterity to restrain him for a mere hair cut. And yes, I had to restrain him.
Unfortunately, Lori took the brunt of Henry's explosion. Scratches, bites, punches, and even a fistful of hair ripped out. Lori said that she had never seen an expression of contorted terror on Henry's face like that before, or the kind of back arching and physical contortions he was in to try to get away.
Then the tech offered to try again.
Needless to say, they came home. I knew something was wrong when I saw Lori's car in the garage when I pulled into the driveway coming home from class. She had just gotten Henry to sleep -- calmly and in his own bed -- when I came in the house.
So the moral of this story is this.
To all of my friends who are in the medical field and those studying to go into the medical field, please remember your street smarts on top of the book smarts. Don't treat kids with special needs like a by-the-book numbers game, because unfortunately, we've run into more doctors and nurses ill-equipped to handle special-needs kids than we could have reasonably expected.
I mean, isn't it a thing in one of their classes or something? If not, shouldn't it be? Even if it's just a 10-minute Powerpoint titled "Don't Treat Parents of Special Needs Kids Like Morons Who Don't Know What They're Talking About, They Know Their Kid Better Than We Will?"
Slide 1: should you treat your special-needs patient's parents like uneducated fools?
Slide 2: no.
End of presentation
The neurologist was so entrenched in book knowledge that she apparently had no ability to extrapolate or think beyond the procedure. I get that there are liability issues, but come on. If the kid wasn't going to let you near him, let alone touch him, why would you think that hooking him up to what amounted to a transmission flush machine would be successful?
In the past, when Henry got another ear infection, we went to an urgent care clinic and I told the attending physician what his Dx was to be, and what needed to be prescribed. With the way I presented the information to him, he asked if I was a doctor.
No, I'm a parent who is also a troubleshooter by profession so I know how to present the data of a problem in order to seek resolution. Whether it's a computer or a human body, the technique is the same. Ask the right questions, think analytically, think critically.
On top of the ENT doctor who got annoyed that Henry was terrified of him, the med-student kids who asked inane and irrelevant questions of us while Henry was coming down with bronchial pneumonia, and the pediatric surgeon who decided to hold class for his med student kids in our room while Henry was trying to sleep, please, please, please remember that your patients are people, not chapters in a book.
And just because you may have seen countless similar cases in the 20, 30, 40 years you've done this, not all cases will have the same outcomes. Don't get lazy.
Henry was taken to see a neurologist a while ago in the hopes of figuring out why he's so awful at sleeping, whether it's in going to sleep or staying asleep. Right now, we dose him with melatonin so that he'll fall asleep within a half-hour; before the melatonin, it was a nightly battle of 1½ to 2 hours to get him settled down enough to fall asleep.
Every. Night.
The reason: he was just hyper and could not calm down. We got a suggestion from our FX support group members that a common manifestation for kids with FXS is a non-stop production of cortisol, which puts them physically in a constant fight-or-flight mode. To combat that, we were given the suggestion of giving him melatonin supplements to counteract the overproduction of cortisol.
The first night we gave it to him was a miracle. He went to sleep within a half hour, and we haven't looked back since. A bottle of melatonin liquid is a staple now, and we've come dangerously close to running out a few times. That meant dropping everything and going to buy more, because, like beer, we shall not run out!
The neurologist was unable to examine him because, well, as anyone who knows Henry knows, he is not comfortable around strangers. And it's magnified when he's in a medical facility, because as far as he's concerned, only Bad Things have happened at medical facilities. The neurologist recommended we submit him to a sleep study through Children's Hospital.
Okay, fine.
Tonight was his appointment, and tonight was the night when the inner beast was unleashed.
Since I had class tonight, Lori was to take him in just before bedtime and spend the night in the observation lab. Henry apparently went Incredible Hulk. Because what the neurologist failed to tell us was that the study required all kinds of sensors and wires to be stuck on, around, and even in him (up his nose).
Just hearing that, I could tell you that it was not going to happen. He reacts to hair cuts like we're killing him. It took all of my strength and dexterity to restrain him for a mere hair cut. And yes, I had to restrain him.
Unfortunately, Lori took the brunt of Henry's explosion. Scratches, bites, punches, and even a fistful of hair ripped out. Lori said that she had never seen an expression of contorted terror on Henry's face like that before, or the kind of back arching and physical contortions he was in to try to get away.
Then the tech offered to try again.
Needless to say, they came home. I knew something was wrong when I saw Lori's car in the garage when I pulled into the driveway coming home from class. She had just gotten Henry to sleep -- calmly and in his own bed -- when I came in the house.
So the moral of this story is this.
To all of my friends who are in the medical field and those studying to go into the medical field, please remember your street smarts on top of the book smarts. Don't treat kids with special needs like a by-the-book numbers game, because unfortunately, we've run into more doctors and nurses ill-equipped to handle special-needs kids than we could have reasonably expected.
I mean, isn't it a thing in one of their classes or something? If not, shouldn't it be? Even if it's just a 10-minute Powerpoint titled "Don't Treat Parents of Special Needs Kids Like Morons Who Don't Know What They're Talking About, They Know Their Kid Better Than We Will?"
Slide 1: should you treat your special-needs patient's parents like uneducated fools?
Slide 2: no.
End of presentation
The neurologist was so entrenched in book knowledge that she apparently had no ability to extrapolate or think beyond the procedure. I get that there are liability issues, but come on. If the kid wasn't going to let you near him, let alone touch him, why would you think that hooking him up to what amounted to a transmission flush machine would be successful?
In the past, when Henry got another ear infection, we went to an urgent care clinic and I told the attending physician what his Dx was to be, and what needed to be prescribed. With the way I presented the information to him, he asked if I was a doctor.
No, I'm a parent who is also a troubleshooter by profession so I know how to present the data of a problem in order to seek resolution. Whether it's a computer or a human body, the technique is the same. Ask the right questions, think analytically, think critically.
On top of the ENT doctor who got annoyed that Henry was terrified of him, the med-student kids who asked inane and irrelevant questions of us while Henry was coming down with bronchial pneumonia, and the pediatric surgeon who decided to hold class for his med student kids in our room while Henry was trying to sleep, please, please, please remember that your patients are people, not chapters in a book.
And just because you may have seen countless similar cases in the 20, 30, 40 years you've done this, not all cases will have the same outcomes. Don't get lazy.
Monday, June 15, 2015
One Beginning, One End (Sorta')
Henry's first day of school was today. A special school, of course, given his diagnosis. I learned quickly what the letters SCI and SXI meant, and am rather thankful that Henry's condition is only SCI.
I'm not sure how I'll leverage my education with my experience, but given both of those, plus what Henry (and maybe Evie) will be experiencing, I'm wondering if I should look for opportunities to incorporate technology and training in the special education world. If I can somehow do that where I currently work, that'd be the best of all worlds.
Not sure how that degree of specialization would be sustainable but I guess I'll find out, right? :)
But even today, as Lori and I greeted the bus when it pulled up to our house to drop off our baby boy after his first day of school, I wonder what kind of journey is ahead of him and what he'll experience. As hard as it is to hand off our kid to someone else, at the same time, I'm really hoping that the social aspect will be beneficial.
Henry's 3rd birthday is next weekend, and we're not planning a birthday party for him. The chief reason: he doesn't have any friends to invite. He doesn't know anybody. That realization hit me hard last week. Even if we threw a party, it wouldn't be for him. It'd probably be more for us, with our adult friends (not that that's a bad thing, but I still have to pretend that I'm a good father and think about Henry here ;) ).
As Henry takes these first steps into the next phase of childhood, we have to end our phase of Henry being our home-bound infant/toddler. He needs this growth opportunity, and we can't hold him back. And similarly, we need this growth opportunity, so that we grow as parents. As I alluded in my last post, it's still a question, given his situation, of how much space do/can we give, and how much sheltering/support do we give. That's a dilemma we have to resolve ourselves.
We don't know where/when that journey of his will lead. Just as I never expected my college career to last longer than many of my classmates have been alive.
- SCI: severe cognitive impairment
- SXI: severe multiple impairments (which includes physical)
Henry was, of course, unhappy at the beginning of the day, but his teacher called home to give an update on how he was doing. After he saw the playground equipment outside, he apparently calmed down, and then started playing with all the balls available in the room, as well as the lighted musical toys. He ate all of his lunch and even drank from a sippy cup (and if you've been following along in Henry's development path, that in and of itself is huge).
Lori, however, was a wreck this weekend :)
And why shouldn't she have been? Her baby boy was leaving home by himself, without either of us. Strangers were taking him away and managing him all day. I think this is a very reasonable worry, even if it is drawn more from emotion than reason.
Because in matters of parent-child relationships, reason sometimes flies out of the window and sails away on the updrafts of remembering their newborn photos. Hell, Evie is -- currently -- totally Daddy's Girl, so much so that when Lori and I were standing in the middle of the living room, my arm around her to comfort her in preparation for today, Evie came up to us and pushed Lori away so that she could raise her arms to be picked up by me.
Which, as many of my female friends will giggle over (as well as my male friends who have daughters), was totally expected!
Anyway, Henry has reached this new milestone. This was the first day of a journey that will last a likely 23 more years. I have no idea how he'll grow, how he'll evolve, and what he'll learn, but I'm betting that he'll grow, evolve, and learn a lot. Despite our own relative intelligence and wisdom as smart people, we are not trained in the arts of educating special-needs children. For this, we need the experts and specialists.
To bookend that, I myself am getting closer to the end of my education. Or at least, these immediately obvious traffic stops. After tonight's (mind-numbing) class, I'm 3 away from completing the first half of the last semester of my undergraduate career. After next week, Summer Session I will be done. A week after that, Summer II begins with my final class as an undergraduate.
In August, I will be done.
I began my college efforts in the fall of 1991, as a dutiful high school graduate. My first semester was excellent. My second semester, though, as an arrogant 18/19-year-old was not so excellent (in fact, it was downright miserable, and I only passed one class by 0.1 over the bare minimum; I think my professor took pity on me for at least making the effort to submit make-up work after not even showing up for the majority of that semester).
I'll be concluding my 4-year university program after a total of 24 years of trying.
Henry will have two weeks of school to begin, then with about two weeks off. After that, he'll slowly be ramping up into the traditional fall schedule. By then, I'll have completed my bachelor's degree and begun my master's program.
(and yes, the Star Wars reference has crossed my mind more than once; let's not dwell on it too long, okay?)
I'm not sure how I'll leverage my education with my experience, but given both of those, plus what Henry (and maybe Evie) will be experiencing, I'm wondering if I should look for opportunities to incorporate technology and training in the special education world. If I can somehow do that where I currently work, that'd be the best of all worlds.
Not sure how that degree of specialization would be sustainable but I guess I'll find out, right? :)
But even today, as Lori and I greeted the bus when it pulled up to our house to drop off our baby boy after his first day of school, I wonder what kind of journey is ahead of him and what he'll experience. As hard as it is to hand off our kid to someone else, at the same time, I'm really hoping that the social aspect will be beneficial.
Henry's 3rd birthday is next weekend, and we're not planning a birthday party for him. The chief reason: he doesn't have any friends to invite. He doesn't know anybody. That realization hit me hard last week. Even if we threw a party, it wouldn't be for him. It'd probably be more for us, with our adult friends (not that that's a bad thing, but I still have to pretend that I'm a good father and think about Henry here ;) ).
As Henry takes these first steps into the next phase of childhood, we have to end our phase of Henry being our home-bound infant/toddler. He needs this growth opportunity, and we can't hold him back. And similarly, we need this growth opportunity, so that we grow as parents. As I alluded in my last post, it's still a question, given his situation, of how much space do/can we give, and how much sheltering/support do we give. That's a dilemma we have to resolve ourselves.
We don't know where/when that journey of his will lead. Just as I never expected my college career to last longer than many of my classmates have been alive.
Friday, May 8, 2015
Too High or Too Low
The kids are both pretty dang awesome. Both of them just thrill me to no end, despite how exhausting it is to keep up with them and also maintain adult responsibilities. Henry is clearly the sensitive one while Evie is the adventurous one. She has no qualms or fears about just exploring everything in sight, whether we want her in these crevices between furniture or not. Henry is content to play and explore the objects around him and how they work. |
| She's going to be the "play in the dirt" kid |
Evie would be pleased as punch to destroy them.
With Henry, we were rather spoiled (special needs aside). He slept through the night early on (though that stopped recently), he was content to lie around or sit around in one place and contemplate the universe. Of course, part of that was due to his physical limitations that didn't start resolving until about January/February of last year when he slowly grew strong enough to be able to stand then walk on his own. But despite that, he seemed to be satisfied just playing in one place.
Evie cannot be stopped. Her phases of rolling, belly crawling, then full crawling, then walking took barely just over a year whereas Henry was about 19 months old when he was able to walk with confidence. Evie learned on her own how to get up and down stairs. If Henry is quiet, it's okay -- that meant he was playing by himself, which was a brief and rare respite.
If Evie is quiet, it's cause for worry.
So when it comes to developmental milestones, we are unprepared for Evie. For most of them, she's not only meeting them but surpassing some. The only one she hasn't hit yet is speech, but we'll tackle that one later. The point is that because Henry was and is so behind in many of his milestones, we just didn't know what it was like to have a more typical child.
For the average family, think of it this way. Your first child is growing and developing as expected. Speech, behavior, physical and cognitive abilities are all on track. You get used to it, so when he's 5, you have your second child. Then that second child turns out to be a second-coming of Mozart. At 3 years old, she's composing sonatas and then investigating methods of safe-cracking (on the Internet while using a proxy so that the NSA can't track her), all with the self-control, restraint, and social development of a toddler.
Because of the difficulties we faced and will face with Henry's growth and development, and with his diagnosis, there was that requisite period of despondency and quite frankly, mourning. The reality is that we mourned what might never be with him. We lived in denial for a while, but eventually, we had to come to terms with the fact that Henry will never be "normal."
I even hate typing that, but that's what it is.
We're terrified about matters of succession; if something happens to us, who can take care of him? We don't know. He may surprise us later in life, but we can't rely on that. We've come to terms with the fact that it's not realistic or reasonable that he'll study astronomy at the University of Hawaii straight out of high school.
In fact, we're not even confident he'd go to a traditional high school at all.
If he can one day go grocery shopping on his own as an adult, we would be over the moon. That's the level of hope that we've had to adjust to.
And that brings me to the point of the title of this post. Because of the crushing defeat we felt with Henry's diagnosis, we're guarded and actually somewhat pessimistic about Evie's potential as a defense mechanism. We don't want to let ourselves get too far ahead in terms of Evie's future lest those hopes get dashed even harder against the rocks. And that can't be a good thing.
We end up being cautious not to expect too much of Evie despite our emotions, but at the same time, we have to be careful not to expect too little of Henry, because that's not fair to him.
But it's a hard balance to strike when you're caught in the middle of uncharted territory like this.
Neither of the kids are very physically affectionate in a traditional sense. They don't cuddle, they don't come up for hugs, or just absently hold hands. Both of them have tactile defensiveness, which means they don't like being touched in certain ways. Their hands are particularly bad such that trimming nails is not just an ordeal but if someone stood on the driveway outside our side door and listened, they'd wonder if we were torturing and beating them for as much as they protest (Henry more than Evie; Henry screams and thrashes while Evie merely yells and cries...."merely," he says).
But recently, Henry has come up to me and asked to be picked up (in his own non-verbal way, of course). And when I do, he simply melts. He lays his face down on my shoulder and absently twirls my hair around his fingers. And of course, my heart explodes. I don't care if I'm already 10 minutes late in leaving for work. I'll take that for as long as I can. Evie smiles at me when I come home from work and greets me in her own unique series of grunts, babbles, and noises.
With their play, their interactions with us and lately with each other, I'm seeing two children who are growing on their own individual paths that are intertwined with us and each other. Maybe not necessarily to the expectations of the rest of the world, though. And while it's cliche to say that doesn't matter, sometimes it's hard because we're still a part of the world and we do have to interact with it.
We do have to answer questions about them and other people want to interact with these kids. Other kids want to play with them, and sometimes don't understand why they're not talking or playing in a way that's expected of them. In that, I worry less about Evie's ability to cope and I'm probably a little over-protective of Henry.
But again lies the danger of expecting too much of Evie while expecting too little of Henry.
And then I wonder if I'm overdoing that. In my desire to protect them from the cruelties of the world -- especially toward anyone different, toward anyone with the label "special needs" -- am I instead doing them a disservice? This is a rhetorical question, because that's part of my homework assignment as a father. I need to figure out not only what they need, but what my responsibilities are.
So just as kids don't come with instruction manuals for parents, there's at least some kind of Ikea-like diagrammatic guide for neuro-typical kids. What we have for special needs kids is an instruction manual for assembling a Whirlpool refrigerator that was included in the package for a suspension system for a Ford F-150, written backwards with French words using the Greek alphabet.
Yet somehow, this suspension system is somehow keeping our beer and hamburger patties cold. And we don't know why or how, but we'll take it.
How much room to fly do I give Evie? How much of a cushion do I provide Henry? Or do I reverse that? How much of a cushion do I provide Evie and how much room do I give Henry to fly?
Or how much room do I give both of them to fly? And what do I do with myself when/if they keep flying? Should that "if" have even been in that sentence, and if not, how can I make myself comfortable without it?
 |
| I got this iPad for Evie because she showed an aptitude for technological devices. Yet Henry's the one who surprised me with his interest and ability with it. |
Tuesday, April 28, 2015
Developmental Delays
The funny thing about the term "developmental delays" is the connotation that it invokes in people's minds. Admittedly, it does the same to me, too, even though I know it's not accurate. But the image is that it's an across-the-board assessment of a person's position on a sort of timeline of expected development. For instance, if a child who is 2 years old is developmentally delayed and assessed at about the 6-month mark, the assumption is that the 6-month development milestone applies broadly to all aspects of development.
But of course, that's not true.
Developmental milestones run the gamut of development. Even in the broad term of "cognitive" or "intellectual," it only means that in general, the patient is approximately at whatever level that was determined. It doesn't mean that it applies to all things across the board, while those of us who don't have developmental delays are expected to be at our age-appropriate stages.
Henry is, of course, behind on a lot of things. The easiest way that I describe it to others is that he's a 2½-year-old in a 4-year-old's body with the mind of a 1-year-old. It's far too simplistic, of course, but given that it's tough to get engagement in casual conversation with people who aren't invested in his well-being to actually give a damn, that's about the extent of the conversation before it treads into an area of discomfort.
It's the easy way to set the stage without forcing someone who isn't ready to deal with this to deal with it.
However, I know in my own head and with my own experience with Henry that such a blanket statement doesn't actually apply to him. I know he's capable of more and he's shown it. He's shown a lot of advanced abilities to us, but not to those at MISD who are doing his assessments, so his paperwork says one thing, but we know he's beyond that in certain areas.
He doesn't speak in words, but he does speak....to us. Even though we don't know all of his grunts and vocalizations, we do a reasonably decent job in deciphering what he wants to say, because Henry-speak is a combination of his babbles and body language. We know he's capable of more, and that becomes evident in some of his play.
I don't remember exactly when we started doing this, but Henry has a plastic cereal bowl that he likes to play with in the kitchen. He's never actually eaten cereal out of it. It's not a utensil. It's a toy. He and I throw and slide things across the floor to each other, like a game of "catch." This bowl was one of them. What I don't remember is when I started rolling this bowl on its side to him, and he fell in love with that.
(normally, we're both better at this than what the video shows)
What's significant is that, barely two or three times after I rolled it on its side to him, he started trying to do the same. And he's actually pretty good at it, despite his age, coordination, and difficult lot in life. Maybe there is something to certain talents that kids who are on the autism spectrum have that belie their other difficulties (not saying that Henry is on the spectrum, but just using it as illustration).
But this is just one example of the things that Henry is actually very good at. Things that therapists and teachers at school don't always see, and things that our pediatrician's office definitely doesn't see (because they are so unprepared and almost kind of unwilling to deal with special-needs kids, it seems -- the only doctors at that office who were prepared for this and even embraced it have left the practice, of course). Also included in the differences between what they see and what we see is also a bit of shrewd calculation in Henry.
What may come across as inability or incomprehension to perform a task, we can actually sometimes see it as apathy or preference. In other words, is there a chance that, when he doesn't perform a task, it's just that he doesn't want to versus unable to? We can see it in his body language and in how he behaves at home.
So the term "developmental delay," while it's applicable in a general sense to categorize a person, it certainly doesn't tell the whole story.
But of course, that's not true.
Developmental milestones run the gamut of development. Even in the broad term of "cognitive" or "intellectual," it only means that in general, the patient is approximately at whatever level that was determined. It doesn't mean that it applies to all things across the board, while those of us who don't have developmental delays are expected to be at our age-appropriate stages.
Henry is, of course, behind on a lot of things. The easiest way that I describe it to others is that he's a 2½-year-old in a 4-year-old's body with the mind of a 1-year-old. It's far too simplistic, of course, but given that it's tough to get engagement in casual conversation with people who aren't invested in his well-being to actually give a damn, that's about the extent of the conversation before it treads into an area of discomfort.
It's the easy way to set the stage without forcing someone who isn't ready to deal with this to deal with it.
However, I know in my own head and with my own experience with Henry that such a blanket statement doesn't actually apply to him. I know he's capable of more and he's shown it. He's shown a lot of advanced abilities to us, but not to those at MISD who are doing his assessments, so his paperwork says one thing, but we know he's beyond that in certain areas.
He doesn't speak in words, but he does speak....to us. Even though we don't know all of his grunts and vocalizations, we do a reasonably decent job in deciphering what he wants to say, because Henry-speak is a combination of his babbles and body language. We know he's capable of more, and that becomes evident in some of his play.
I don't remember exactly when we started doing this, but Henry has a plastic cereal bowl that he likes to play with in the kitchen. He's never actually eaten cereal out of it. It's not a utensil. It's a toy. He and I throw and slide things across the floor to each other, like a game of "catch." This bowl was one of them. What I don't remember is when I started rolling this bowl on its side to him, and he fell in love with that.
(normally, we're both better at this than what the video shows)
What's significant is that, barely two or three times after I rolled it on its side to him, he started trying to do the same. And he's actually pretty good at it, despite his age, coordination, and difficult lot in life. Maybe there is something to certain talents that kids who are on the autism spectrum have that belie their other difficulties (not saying that Henry is on the spectrum, but just using it as illustration).
But this is just one example of the things that Henry is actually very good at. Things that therapists and teachers at school don't always see, and things that our pediatrician's office definitely doesn't see (because they are so unprepared and almost kind of unwilling to deal with special-needs kids, it seems -- the only doctors at that office who were prepared for this and even embraced it have left the practice, of course). Also included in the differences between what they see and what we see is also a bit of shrewd calculation in Henry.
What may come across as inability or incomprehension to perform a task, we can actually sometimes see it as apathy or preference. In other words, is there a chance that, when he doesn't perform a task, it's just that he doesn't want to versus unable to? We can see it in his body language and in how he behaves at home.
So the term "developmental delay," while it's applicable in a general sense to categorize a person, it certainly doesn't tell the whole story.
Wednesday, March 4, 2015
It Begins
I haven't posted much recently, because there hasn't been anything major in the development of the kids beyond what we've posted on Facebook. Most of it has been Evie growing from infant to toddler, and Henry....well, Henry's development is as kinda' expected. He does still surprise us with what he perceives and understands, but in other ways, he's still very much delayed.
Since the last write-ups, Evie has learned to pull herself up with support, then walk, then squat to reach an object on the floor, then stand up without support. She knows her brother's name, because at her school/therapy sessions, when another boy named "Henry" is mentioned, she looks for him. Her PT has mentioned that, because she's now on track for typical development, she is growing out of MISD's PT services.
Henry is getting taller and taller. When we take him to public play areas, it's simultaneously confounding and heartbreaking. For one, there are kids older than him but obviously smaller. Which means that they think he's an older boy. On the other hand, his intellectual disability means that these kids who think he's older can't comprehend why Henry isn't engaging with them like they think he should.
And how do you explain an intellectual disability to a 3 or 4-year-old?
Recently, we were supposed to have a meeting with MISD to discuss Henry's future after a psych evaluation. But of course, in the comedy of errors, we and Henry's teacher and support staff are frustrated by bureaucracy. The psychologist who evaluated Henry a few months ago hasn't completed the psych report because she got distracted by personal matters and even Henry's teacher hasn't been successful in trying to get a response from her.
We were supposed to meet with a representative from Utica Community Schools, but that got cancelled due to the recent cold-weather closures, and when that meeting was rescheduled, UCS never showed up. Although, really, UCS has little motivation to participate because I believe the purpose of this meeting with UCS is to get their sign-off to release Henry as a student head-count to MISD. This means that even though we live in the UCS district, they wouldn't be receiving the per-pupil foundation allowance from the state for him.
What we could get as far as information from his evaluation was that he's categorized in a broad sense as being around the 6 month mark in intellectual development. As such, we have an idea of what his future holds.
I'd be lying if I said that I was totally okay with this.
Now, don't get me wrong. We will do everything necessary to put this boy up in as comfortable a life as we can give him. Because, holy crap, have y'all seen this kid smile in pure and unrestrained joy? I love this kid with every ounce of my being. I shudder for the day when he strikes out on his own, and the people around him look at him and treat him like.....yes, a "retard."
That hurts me, knowing that I can't protect him for the rest of his life.
Those of you who know Henry, who've known him since birth, who know us, know that the R-word is a terrible word because you now know someone else to whom it's being applied by an ignorant society. We could argue semantics all day about the connotations and denotations of the word "retard" (REE-tard vs. re-TARD) and its context (we had this discussion already on FB), but for the sake of argument, just follow me along this train of thought and believe me when I say that it's not being used in its clinical context but rather in its vernacular form.
Lori had an experience recently when she took Henry to Burger King to play in the play area, just to blow off some steam. Another boy was there, one smaller than Henry but older (and neuro-typical). The other boy expressed frustration to Lori that Henry wasn't engaging in play the way he was expected to, and what's she to do? She doesn't know this kid, and it's none of his or his completely disengaged mother's business to understand the ramifications of genetic issues, neurological disabilities, and cognitive/intellectual disorders.
All this kid knows is that Henry isn't playing the way he wanted Henry to play. And Henry didn't really care or engage that much anyway.
In the special-ed circles, Henry is officially SCI. For the layperson, that stands for "severe cognitive impairment." This means that our 2½ year old son has the mental capacity and capability of pretty much an infant (for now). We don't know what his development path will be, when he will achieve milestones, how he will behave in the future, none of it.
He may very well be another version of that young woman who was roughed up by Livonia police at Walmart.
Which also makes the well-meaning but ultimately empty assurances from others that "it'll be okay, kids will grow out of it" that much more hollow and actually a bit hurtful, because no, no it won't. Henry will be going to a special school in MISD's system for special needs kids, and the age range of students there is 3 to 26.
Let that sink in for a moment.
26.
That's the boundary for government aid for schools to take care of kids with disabilities. Henry will be going to this school for the next twenty three years.
Saying that "they'll grow out of it" just feels dismissive because it comes from a perspective that just cannot be fathomed by those who've never gone through this, people who just don't know. Who will not have to go through this. We who have children may joke that our kids won't leave our households until they're in their 30s.
We are living that possible reality.
By the time Henry outgrows the school, I'll be in my mid-60s. I intend to be physically vital well into my 80s. But good intentions can't mitigate reality. And that reality includes the possibility that Henry will be relegated to an assisted-living facility for the rest of his life, or that I'll get taken down by something I can't predict or prevent.
And then there are the costs of such care. I have to think of financial ramifications that "normal" families don't have to consider. I occasionally have conversations with folks who don't have special-needs children, and the most common reaction I've gotten has been surprise and a little bit of guilt because I have to think of things they don't, and didn't realize were so significant.
So I hope you can understand why it's a bit irritating to hear "oh, it'll be okay, it'll work out."
All of these are, of course, those emotionally-charged thoughts that tumble around my head when I'm by myself. Usually on the highway driving to and from work. They're irrational, I know. But I need these moments to lash out and blow off steam even if it's inside my own head, just to clear the air so that I can approach what needs to be done with clearer purpose and forethought.
I've spent the majority of this post talking about Henry. But what about Evie?
So far, Evie is on track in development.....except in speech and vocalization. Now, one could say "don't worry about it, it'll come in due time." But how much of that is denial? She has the same genetic condition Henry does. And while Fragile X affects girls differently than boys, it doesn't mean that there's no effect.
I'm not sure how much of her responsiveness is due to her condition or just the fact that she's a bit more headstrong than Henry. I don't know if she's just ignoring me or if she's not processing communication. I lived with that denial with Henry at around the same age, so now I'm worrying whether I'm overreacting with Evie as a result of having gone through this with Henry.
For her therapy sessions, though, she's going to be moved to the group environment pretty soon. She doesn't have much opportunity to play with other kids so this is a better chance in a controlled situation, rather than the indoor play area at Lakeside Mall.
Evie impresses us every day. Her physical ability, her reasoning, and her curiosity are all things that we're just not used to, because Henry never did these things at the same age. He still doesn't go down stairs by himself (although he's getting better at it as long as one of us is holding his hand). We can't stop Evie, short of physically picking her up.
I bought them a wind-up lobster as a tub toy, and when it runs out, Evie will pick it and give it to us so that we can wind it up again. If we don't respond right away, she grabs our hand, puts the lobster in it, then looks at us expectantly.
She plays independently, and she's the one where, if it's quiet, we have to worry. If Henry was quiet, that was a relief, a brief reprieve in an otherwise whirlwind of nonstop activity -- because it's Henry. Evie, on the other hand, is probably in the middle of destroying something.
And that makes my heart fill with happiness.
I do also catch myself feeling a bit guilty because I have to worry about Evie less than I do about Henry. So then comes the question of equity -- with Henry's needs, am I worrying about him more at Evie's expense? Am I inadvertently ignoring her because Henry requires more attention? Or do I shower Evie with attention as compensation and if I do, am I ignoring Henry?
I know these questions affect all parents of multiple children regardless of any special needs or conditions, so I'm not looking for answers here. Just more rhetorical statements than anything else.
But they are the ones that tumble through my head, the things I don't talk about at the bar.
Since the last write-ups, Evie has learned to pull herself up with support, then walk, then squat to reach an object on the floor, then stand up without support. She knows her brother's name, because at her school/therapy sessions, when another boy named "Henry" is mentioned, she looks for him. Her PT has mentioned that, because she's now on track for typical development, she is growing out of MISD's PT services.
Henry is getting taller and taller. When we take him to public play areas, it's simultaneously confounding and heartbreaking. For one, there are kids older than him but obviously smaller. Which means that they think he's an older boy. On the other hand, his intellectual disability means that these kids who think he's older can't comprehend why Henry isn't engaging with them like they think he should.And how do you explain an intellectual disability to a 3 or 4-year-old?
Recently, we were supposed to have a meeting with MISD to discuss Henry's future after a psych evaluation. But of course, in the comedy of errors, we and Henry's teacher and support staff are frustrated by bureaucracy. The psychologist who evaluated Henry a few months ago hasn't completed the psych report because she got distracted by personal matters and even Henry's teacher hasn't been successful in trying to get a response from her.
We were supposed to meet with a representative from Utica Community Schools, but that got cancelled due to the recent cold-weather closures, and when that meeting was rescheduled, UCS never showed up. Although, really, UCS has little motivation to participate because I believe the purpose of this meeting with UCS is to get their sign-off to release Henry as a student head-count to MISD. This means that even though we live in the UCS district, they wouldn't be receiving the per-pupil foundation allowance from the state for him.
What we could get as far as information from his evaluation was that he's categorized in a broad sense as being around the 6 month mark in intellectual development. As such, we have an idea of what his future holds.
I'd be lying if I said that I was totally okay with this.
Now, don't get me wrong. We will do everything necessary to put this boy up in as comfortable a life as we can give him. Because, holy crap, have y'all seen this kid smile in pure and unrestrained joy? I love this kid with every ounce of my being. I shudder for the day when he strikes out on his own, and the people around him look at him and treat him like.....yes, a "retard."
That hurts me, knowing that I can't protect him for the rest of his life.
Those of you who know Henry, who've known him since birth, who know us, know that the R-word is a terrible word because you now know someone else to whom it's being applied by an ignorant society. We could argue semantics all day about the connotations and denotations of the word "retard" (REE-tard vs. re-TARD) and its context (we had this discussion already on FB), but for the sake of argument, just follow me along this train of thought and believe me when I say that it's not being used in its clinical context but rather in its vernacular form.
Therefore, in that context, please understand and abide by our wishes to stop using that word, at the very least in our presence. And if you can, strike it from your own vocabulary and put it in the same bin you hopefully put "nigger" and "fag."
Lori had an experience recently when she took Henry to Burger King to play in the play area, just to blow off some steam. Another boy was there, one smaller than Henry but older (and neuro-typical). The other boy expressed frustration to Lori that Henry wasn't engaging in play the way he was expected to, and what's she to do? She doesn't know this kid, and it's none of his or his completely disengaged mother's business to understand the ramifications of genetic issues, neurological disabilities, and cognitive/intellectual disorders.
All this kid knows is that Henry isn't playing the way he wanted Henry to play. And Henry didn't really care or engage that much anyway.
In the special-ed circles, Henry is officially SCI. For the layperson, that stands for "severe cognitive impairment." This means that our 2½ year old son has the mental capacity and capability of pretty much an infant (for now). We don't know what his development path will be, when he will achieve milestones, how he will behave in the future, none of it.
He may very well be another version of that young woman who was roughed up by Livonia police at Walmart.
Which also makes the well-meaning but ultimately empty assurances from others that "it'll be okay, kids will grow out of it" that much more hollow and actually a bit hurtful, because no, no it won't. Henry will be going to a special school in MISD's system for special needs kids, and the age range of students there is 3 to 26.
Let that sink in for a moment.
26.
That's the boundary for government aid for schools to take care of kids with disabilities. Henry will be going to this school for the next twenty three years.
Saying that "they'll grow out of it" just feels dismissive because it comes from a perspective that just cannot be fathomed by those who've never gone through this, people who just don't know. Who will not have to go through this. We who have children may joke that our kids won't leave our households until they're in their 30s.
We are living that possible reality.
By the time Henry outgrows the school, I'll be in my mid-60s. I intend to be physically vital well into my 80s. But good intentions can't mitigate reality. And that reality includes the possibility that Henry will be relegated to an assisted-living facility for the rest of his life, or that I'll get taken down by something I can't predict or prevent.
And then there are the costs of such care. I have to think of financial ramifications that "normal" families don't have to consider. I occasionally have conversations with folks who don't have special-needs children, and the most common reaction I've gotten has been surprise and a little bit of guilt because I have to think of things they don't, and didn't realize were so significant.
So I hope you can understand why it's a bit irritating to hear "oh, it'll be okay, it'll work out."
All of these are, of course, those emotionally-charged thoughts that tumble around my head when I'm by myself. Usually on the highway driving to and from work. They're irrational, I know. But I need these moments to lash out and blow off steam even if it's inside my own head, just to clear the air so that I can approach what needs to be done with clearer purpose and forethought.
I've spent the majority of this post talking about Henry. But what about Evie?
So far, Evie is on track in development.....except in speech and vocalization. Now, one could say "don't worry about it, it'll come in due time." But how much of that is denial? She has the same genetic condition Henry does. And while Fragile X affects girls differently than boys, it doesn't mean that there's no effect.
I'm not sure how much of her responsiveness is due to her condition or just the fact that she's a bit more headstrong than Henry. I don't know if she's just ignoring me or if she's not processing communication. I lived with that denial with Henry at around the same age, so now I'm worrying whether I'm overreacting with Evie as a result of having gone through this with Henry.
For her therapy sessions, though, she's going to be moved to the group environment pretty soon. She doesn't have much opportunity to play with other kids so this is a better chance in a controlled situation, rather than the indoor play area at Lakeside Mall.
I bought them a wind-up lobster as a tub toy, and when it runs out, Evie will pick it and give it to us so that we can wind it up again. If we don't respond right away, she grabs our hand, puts the lobster in it, then looks at us expectantly.
She plays independently, and she's the one where, if it's quiet, we have to worry. If Henry was quiet, that was a relief, a brief reprieve in an otherwise whirlwind of nonstop activity -- because it's Henry. Evie, on the other hand, is probably in the middle of destroying something.
And that makes my heart fill with happiness.
I do also catch myself feeling a bit guilty because I have to worry about Evie less than I do about Henry. So then comes the question of equity -- with Henry's needs, am I worrying about him more at Evie's expense? Am I inadvertently ignoring her because Henry requires more attention? Or do I shower Evie with attention as compensation and if I do, am I ignoring Henry?
I know these questions affect all parents of multiple children regardless of any special needs or conditions, so I'm not looking for answers here. Just more rhetorical statements than anything else.
But they are the ones that tumble through my head, the things I don't talk about at the bar.
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