I am the Queen of Paperwork.
It's a duty that fell to me pretty early on in my marriage. I married a veteran. Do you have any idea of how much paperwork that generates? Benefits, schooling, loans, withdrawing from our TSP...all of it usually involves pages of forms in triplicate. I can rattle of my husband's social security number with more confidence than my own. My printing is smooth, as legible as a second grade teacher's, neat rows of uniformly-sized black letters, and no one even knows what my husband's actual signature looks like anymore...not even him.
My check marks are flawless, I keep copies, I leave nothing blank but instead firmly write N/A where it is applicable.
If filling out paperwork were an art form, I would totally be Van Gogh.
Until now.
Junior had his pre-kindergarten screening several weeks ago. I was worried that he would refuse to answer any of their questions, that he would clam up and shut down like he often does. But I was wrong - he interacted and answered their questions the best way he knew how, and before we left, the Special Education Director came to speak with me about the very great possibility that Junior would be referred on for further testing in order to get him enrolled in the Special Education program.
I am not going to lie: It was a blow to my heart. I knew he was behind in some skill sets, and that his social and emotional skills were also behind, which is why he is going to be evaluated at Children's Mercy. But here was this very sweet lady telling me that there was some real issues in the way that Junior processes information, things that I never even saw because he's so verbal and so bright in so many ways that frankly, I never had much concern.
For example, when asked what's wrong with a picture, Junior will tell you that nothing is wrong with the picture - and he is right. The picture isn't torn, or ripped, or stained - the picture itself is fine. It's getting him to understand that the picture represents something...but he is so literal-minded that getting him to see that is an obstacle. I could give you 47 other examples of how his answers weren't wrong, exactly...just not right, either.
So, Justin and I were prepared when we got the call the following week with Junior's scores. What they were able to score was very low, and many other things they couldn't score at all. The SpEd director was again very kind, and helped us both realize, as parents, that this was actually the best, most positive path we could take for our child...and I wholeheartedly agree.
I don't know if knowing that has made me cry any less, though.
And so we received a very detailed "parental input" form through the mail. I immediately opened it, set down at the kitchen table with my nice, black, form-filling-out pen. I filled out all the normal stuff - the name, the DOB, the parental names, the address...and then I stopped. I read it. I read it again. And then I put it on top of the refrigerator, telling myself I had 30 days, and that testing won't even resume until August...I put it away because I didn't like the questions.
I got it back out today, because hiding stuff (literally) doesn't make me stop thinking about it, and I decided that the best course of action was to just do it.
And so I am reading things like What best describes your child? Check all that apply: Easily frustrated. Check. Pushes limits. Check. Bothered by noise. Check. Anxious. Check. Difficulty getting over situations. Check. Check. Check.
And I'm filling out things like Please provide any other relevant information that may be helpful in determining your child's specific needs with "Obsessions with vacuums, fans, outlets and drains. Cannot be deterred from talking about them, building them, etc. Prevents him from learning other skills or interacting appropriately with other people."
Are you concerned with diet? Yep.
What other areas are you concerned with? EVERYTHING.
And with each answer, I am writing in tiny, cramped letters, adding asterisks with corresponding asterisks to qualify my answers, scribbling "see backside for more info" and all of it seems so damned negative, and I am getting sick to my stomach, thinking, "Jesus Christ, why wasn't I concerned 6 months or a year ago? What the hell is wrong with me?" and I am also thinking, "Yes, he is all of this - he hates letters and being touched by strangers and beeping noises and yes, he has seizures and yes, he freaks out if you don't serve his American cheese slices just so and yes, yes - he does know his shapes and colors, but do they need to know that he doesn't understand the concept of shapes and colors, that he has memorized what a triangle looks like but he also demands to know what shape 4 o'clock is and whether Wednesday is blue or green?"
And by the time I finish, it's smeared with ink and things have been scribbled out and then re-added and it all adds up true - it's all him, but it isn't him. Where's the part where I can tell them how sweet he is, how after 8 hours of mind-blowing, non-stop activity, after I've washed the day's accumulation of grime off his perfect, sturdy little body, that his favorite thing to do is sit on my lap and sing songs? Where's the part where I can tell them how funny he is? How he laughs so hard sometimes he collapses, how sometimes he laughs so hard he toots and then laughs harder while crying, "DID YOU HEAR A DUCK?" Where's his helpfulness? His creativity? He may not be able to draw a shape, but he can build a vacuum out of mega blocks that would put an 8 year old to shame. Where's the part where I can tell them he wakes up every morning and wants me to open the blinds right away so he can shout "GOOD MORNING, WORLD!" Where can I put his happy nature? His love of music and dancing, how tender he can be, how protective? Where do I tell them that he is, in our home, the center of our universe, that he is our very heart?
I will tell you - the back of the last page. That's where I put it. In neat, uniform black letters. With no cross outs, no addendums, no asterisks to qualify what I wrote.
Is it relevant to them? Probably not. Is it relevant to my son? Yes.
Because you see, the whole concept that there is something different about my child doesn't phase me, because frankly, we have known that for awhile. And I have even gotten over this irrelevant fear I have had about "labels" because if getting him "labeled" as something - whatever it may be - is how he is going to get the help he needs to succeed in this world, we are okay with that. Labels, after all, are much different than limitations. And at the end of the day, there is no label or diagnosis that could ever stop Justin and me from being so proud of exactly who our son is - there is nothing anyone could say that will ever make us doubt that our son is amazing and perfect. A label is nothing. It's just sort of like...well, "handle with care." Sometimes "open at your own risk." Sometimes it's "fragile."
A label does nothing to change the content of his character.
What does bother me, at night, after my son is fast asleep, perhaps clutching his dust buster, or maybe his favorite battery-operated fan, is the realization that the world will not see him through his mother's eyes. What frightens me is the fact that I will not and cannot always be there to interpret the world for him, and, in turn, interpret him to the world.
But what I can do is fill out this paperwork, giving the people who need to know him everything they need to know...and everything I want them to know. And, in doing that, I'm helping my son take the first step to becoming his own interpreter.
There is such a huge part of me that wishes I could just keep him home with me, making hand puppets and letting him vacuum up cracker crumbs and playing in the dirt. But I won't do that. It isn't possible, and it isn't fair to him. Or to anyone who is lucky enough to meet him.
And you know what? You're welcome, world.
Friday, May 23, 2014
Tuesday, May 20, 2014
Big Lessons
This was not the blog I intended to write today.
Junior's been sick. And then, at the tail-end of his illness, I got sick. Neither one of us still feel that great, and so here we are, going on day 3 of Kleenexes, bad moods, Garfield overdose and cabin fever (to replace the real fever). And since all maintenance activity stops when Mom is sick, I woke up this morning to a filthy house full of the afore-mentioned Kleenexes and abandoned books and a sink full of dishes holding the food that Junior didn't want to eat....which is all the food, ever.
And since I no longer had a fever, I tackled it, and felt better for doing so. I explained to Junior that we were going to take one more day to rest - and by rest, I meant not go outside and run around like maniacs, because I think I may have gotten a cumulative 12 hours of sleep since he first spiked a fever three days ago and started seizing and although I am glad that Junior thinks he feels well enough to resume his normal level of mind-blowing physical activity, Mama is not.
Since I was well enough to clean, I thought maybe I was well enough to do some writing - I try to do a little every day, because it's the one big thing I do that is for me, and I think that's important, and after several days of not doing it, I really wanted to do it. So, I got Junior involved in building a car wash, complete with water, on a pile of towels in the living room, made myself a cup of coffee and sat down at my computer desk, and opened up something I have been working on.
And before I could type even a single letter, here comes Junior. First he just stood there quietly, holding on to my arm. And I'm all holding my breath, hoping that if I don't respond, maybe he would drift away. But then he was leaning against my hip. Then draped across my thighs. And then, all suddenly, he managed to worm his way onto my lap, and it's like I'm dealing with an octopus instead of a boy - he's reaching for the keyboard with one hand and the speaker with the other, all while twisting himself into a more secure position by using his feet against my shins for leverage, and I'm asking God why in the world did He not give us four arms, and just as I move the speaker, Junior upends my coffee mug everywhere.
"Oh, hot brown milk!" Junior says, which is what he calls coffee and is said in his most dramatic fashion, which usually makes me laugh. Not this time.
My keyboard is dripping with the hot brown milk, the desk top flooded, which quickly puddles onto my freshly mopped floor and I'm thinking, "Thank God it wasn't my big coffee mug" because seriously, do you have any idea how much coffee one mug holds? If not, go brew yourself a cup and then dump it on your desk. You will be amazed.
Just kidding. Don't do that.
I blew my cool. "DAMN IT!" I said.
"I'll help you," he said.
"NO. Just...go to the living room and SIT DOWN FOR FIVE MINUTES AND HOLD STILL AND ZIP IT FOR ONCE!"
And, miraculously, he did. He hopped onto the sofa and buried his face in the pillows, and I went to fetch towels and the mop and some cleaner, bitching about sometimes just wanting ten minutes of peace, just ten freaking minutes, occasionally looking up from the dripping mess to give him The Look - the one that usually makes him yell "PUT YOUR EYEBROWS DOWN, MOM!" You know, just in case he couldn't sense my displeasure from my Darth-Vader-like breathing, nostril-flaring, mop-banging and vague threats of day care and perpetual time-outs.
But he didn't yell at me to put my eyebrows down. What he said instead was, "Take a deep breath, Mommy. Do you need a squeeze?"
And my eyebrows froze mid-lift.
This was significant.
See, Junior is beginning the long process of being evaluated for many reasons with several possibilities, including the chance that some of his his behaviors may stem from the area of the brain where his seizures originate. Regardless of what we discover, moving forward, the fact is, many of his behaviors are concerning and our child does not respond like other kids. He freaks out, to use a less medically-accepted term, over things like stores dimming their lights, the beeping noises when trucks back up, not finding the right pair of underwear or the wrong colored sippy cup, new food, or, sometimes even more distressing, normally acceptable food being incorrectly served.
And so recently we have treated his melt-downs differently. Instead of walking away from him, as we do when he has a "normal" tantrum, we scoop him up, cross our arms over his chest, folding his limbs tightly to his body, and we squeeze. The effect is amazing. The first time we tried it, it scared me, because I didn't know how hard to squeeze, but I squeezed, and Junior stopped screaming and whispered, "Squeeze harder."
So it was significant, for me, to see him apply something to a situation involving emotions - something that Junior is, frankly, very behind in.
And it was significant because my child looked at me and thought that maybe I was having a melt-down, and needed his help to reign it in.
My eyebrows came down.
"Yes," I said - although, at that point, I did not need a "squeeze." He had, unknowingly, stopped me mid-tantrum pretty damned effectively. But I wanted Junior to have the opportunity to see that he can help others, even as he needs help himself.
And so he "squeezed" me, taking deep breaths as he did it, and so I mimicked his breathing. "Wow. I really lost my cool, didn't I?" I said, when he was done squeezing. He firmly agreed. And then I handed him a wad of paper towels and had him clean up the chair while I did the rest...which was how I should have handled it in the first place instead of going all Mommy Dearest on him.
I am a realist - God knows this wasn't the first time I lost my shit over something, and I am certain it won't be my last. And I didn't want to turn this into one of those "I learn more from my kids than they learn from me" posts, because that's not technically true - I mean, we have to teach these critters everything from basic personal hygiene to basic human kindness. It's a tall order.
But the lessons I learn from my son are big lessons. They are lessons that are both broad and deep. Lessons that need to be repeated, over and over and over sometimes - like patience and humility. Humor and self-discipline. Owning your wrongs and learning to let them go.
And the need for a lidded coffee cup.
Junior's been sick. And then, at the tail-end of his illness, I got sick. Neither one of us still feel that great, and so here we are, going on day 3 of Kleenexes, bad moods, Garfield overdose and cabin fever (to replace the real fever). And since all maintenance activity stops when Mom is sick, I woke up this morning to a filthy house full of the afore-mentioned Kleenexes and abandoned books and a sink full of dishes holding the food that Junior didn't want to eat....which is all the food, ever.
And since I no longer had a fever, I tackled it, and felt better for doing so. I explained to Junior that we were going to take one more day to rest - and by rest, I meant not go outside and run around like maniacs, because I think I may have gotten a cumulative 12 hours of sleep since he first spiked a fever three days ago and started seizing and although I am glad that Junior thinks he feels well enough to resume his normal level of mind-blowing physical activity, Mama is not.
Since I was well enough to clean, I thought maybe I was well enough to do some writing - I try to do a little every day, because it's the one big thing I do that is for me, and I think that's important, and after several days of not doing it, I really wanted to do it. So, I got Junior involved in building a car wash, complete with water, on a pile of towels in the living room, made myself a cup of coffee and sat down at my computer desk, and opened up something I have been working on.
And before I could type even a single letter, here comes Junior. First he just stood there quietly, holding on to my arm. And I'm all holding my breath, hoping that if I don't respond, maybe he would drift away. But then he was leaning against my hip. Then draped across my thighs. And then, all suddenly, he managed to worm his way onto my lap, and it's like I'm dealing with an octopus instead of a boy - he's reaching for the keyboard with one hand and the speaker with the other, all while twisting himself into a more secure position by using his feet against my shins for leverage, and I'm asking God why in the world did He not give us four arms, and just as I move the speaker, Junior upends my coffee mug everywhere.
"Oh, hot brown milk!" Junior says, which is what he calls coffee and is said in his most dramatic fashion, which usually makes me laugh. Not this time.
My keyboard is dripping with the hot brown milk, the desk top flooded, which quickly puddles onto my freshly mopped floor and I'm thinking, "Thank God it wasn't my big coffee mug" because seriously, do you have any idea how much coffee one mug holds? If not, go brew yourself a cup and then dump it on your desk. You will be amazed.
Just kidding. Don't do that.
I blew my cool. "DAMN IT!" I said.
"I'll help you," he said.
"NO. Just...go to the living room and SIT DOWN FOR FIVE MINUTES AND HOLD STILL AND ZIP IT FOR ONCE!"
And, miraculously, he did. He hopped onto the sofa and buried his face in the pillows, and I went to fetch towels and the mop and some cleaner, bitching about sometimes just wanting ten minutes of peace, just ten freaking minutes, occasionally looking up from the dripping mess to give him The Look - the one that usually makes him yell "PUT YOUR EYEBROWS DOWN, MOM!" You know, just in case he couldn't sense my displeasure from my Darth-Vader-like breathing, nostril-flaring, mop-banging and vague threats of day care and perpetual time-outs.
But he didn't yell at me to put my eyebrows down. What he said instead was, "Take a deep breath, Mommy. Do you need a squeeze?"
And my eyebrows froze mid-lift.
This was significant.
See, Junior is beginning the long process of being evaluated for many reasons with several possibilities, including the chance that some of his his behaviors may stem from the area of the brain where his seizures originate. Regardless of what we discover, moving forward, the fact is, many of his behaviors are concerning and our child does not respond like other kids. He freaks out, to use a less medically-accepted term, over things like stores dimming their lights, the beeping noises when trucks back up, not finding the right pair of underwear or the wrong colored sippy cup, new food, or, sometimes even more distressing, normally acceptable food being incorrectly served.
And so recently we have treated his melt-downs differently. Instead of walking away from him, as we do when he has a "normal" tantrum, we scoop him up, cross our arms over his chest, folding his limbs tightly to his body, and we squeeze. The effect is amazing. The first time we tried it, it scared me, because I didn't know how hard to squeeze, but I squeezed, and Junior stopped screaming and whispered, "Squeeze harder."
So it was significant, for me, to see him apply something to a situation involving emotions - something that Junior is, frankly, very behind in.
And it was significant because my child looked at me and thought that maybe I was having a melt-down, and needed his help to reign it in.
My eyebrows came down.
"Yes," I said - although, at that point, I did not need a "squeeze." He had, unknowingly, stopped me mid-tantrum pretty damned effectively. But I wanted Junior to have the opportunity to see that he can help others, even as he needs help himself.
And so he "squeezed" me, taking deep breaths as he did it, and so I mimicked his breathing. "Wow. I really lost my cool, didn't I?" I said, when he was done squeezing. He firmly agreed. And then I handed him a wad of paper towels and had him clean up the chair while I did the rest...which was how I should have handled it in the first place instead of going all Mommy Dearest on him.
I am a realist - God knows this wasn't the first time I lost my shit over something, and I am certain it won't be my last. And I didn't want to turn this into one of those "I learn more from my kids than they learn from me" posts, because that's not technically true - I mean, we have to teach these critters everything from basic personal hygiene to basic human kindness. It's a tall order.
But the lessons I learn from my son are big lessons. They are lessons that are both broad and deep. Lessons that need to be repeated, over and over and over sometimes - like patience and humility. Humor and self-discipline. Owning your wrongs and learning to let them go.
And the need for a lidded coffee cup.
Saturday, May 3, 2014
Junior's Diary
Dear Diary,
It's been awhile. What with the warmer weather and all, I've been pretty busy...mostly collecting rocks and sticks and digging in the dirt while enthusiastically looking for "bad bugs" and then running to Mom, screaming my head off, when I actually find a bug. She usually laughs at me and says, "Why did you look for a bug if you didn't want to find one?" And I say, "I wanted to look for it, not find it."
And then she says, "You are the most literal-minded child in the world."
She says that a lot, actually. And although she is wrong on a whole bunch of topics (the suitability of Pringles for breakfast, unnecessary bathing, whether or not brushing one's teeth should really be a daily task, and bedtime, just to name a few), she's pretty much right about this one. She tells Daddy about all the language and linguistic classes she took in college, and how this one professor said that everyone who loves language becomes even more fascinated by it when they have a child, how there is something fascinating about watching a little human learn to develop linguistic skills and begin to process blah blah blah and then I eat some dirt while watching Daddy's eyes glaze over a little.
I call glue "paper-stick," for example. Makes more sense then glue, to me. A closet is, and always has been, a shirtie-house, and bras are simply Mommy-shirties. The house and I both get "dirtied down" before we can get cleaned up. She finally retired my Superman t-shirt because every time we went out into public, strangers would ask me "Hey! Are you Superman?" which frankly, baffled me and made me angry, because hello! I am obviously not Superman, so I would quickly (and loudly) reply "NO! I AM JUSTIN RYAN!" Same with shirts that have words printed on them - why would anyone ask me what my shirt says? MY SHIRT DOESN'T TALK. I mean, I am four years old and I have that one figured out. "Go pick out a book to read," Mom will say.
"I DON'T KNOW HOW TO READ," I will reply, because I don't. And frankly, I am too busy to learn.
I am not trying to be funny. In fact, when Mom starts to laugh, I usually point that out, loudly and repeatedly, until she apologizes...but I can still hear the laughing under her words.
The other night, though, I said something that made Mom laugh so hard that she cried (also confusing, to be honest), and she actually climbed up to reach the top shelf of her closet and brought out the dust-covered baby book she hasn't touched in over two years to write it down. (She'll probably just give me her log-in to facebook in lieu of anything meaningful.)
It was bedtime, so I was already feeling a little contentious. She was supervising the whole "go potty and put on your night time pants." (We call them "night time" pants to avoid the indignity of the term "pull ups" and also because I only wear them at night time, so it just makes more sense.)
So I put on my night time pants, and she said, "You know, you've been waking up dry every morning. You've been doing a great job of holding your pee-pee all night."
I gave her a startled, confused look, and then said, "I DON'T TOUCH IT WHILE I AM SLEEPING."
Because it's true, Diary. There are plenty of times when I do touch it, but I am relatively certain that I leave it well enough alone at night. At least for now.
Sincerely,
Justin Ryan Kilgore, Jr.
It's been awhile. What with the warmer weather and all, I've been pretty busy...mostly collecting rocks and sticks and digging in the dirt while enthusiastically looking for "bad bugs" and then running to Mom, screaming my head off, when I actually find a bug. She usually laughs at me and says, "Why did you look for a bug if you didn't want to find one?" And I say, "I wanted to look for it, not find it."
And then she says, "You are the most literal-minded child in the world."
She says that a lot, actually. And although she is wrong on a whole bunch of topics (the suitability of Pringles for breakfast, unnecessary bathing, whether or not brushing one's teeth should really be a daily task, and bedtime, just to name a few), she's pretty much right about this one. She tells Daddy about all the language and linguistic classes she took in college, and how this one professor said that everyone who loves language becomes even more fascinated by it when they have a child, how there is something fascinating about watching a little human learn to develop linguistic skills and begin to process blah blah blah and then I eat some dirt while watching Daddy's eyes glaze over a little.
I call glue "paper-stick," for example. Makes more sense then glue, to me. A closet is, and always has been, a shirtie-house, and bras are simply Mommy-shirties. The house and I both get "dirtied down" before we can get cleaned up. She finally retired my Superman t-shirt because every time we went out into public, strangers would ask me "Hey! Are you Superman?" which frankly, baffled me and made me angry, because hello! I am obviously not Superman, so I would quickly (and loudly) reply "NO! I AM JUSTIN RYAN!" Same with shirts that have words printed on them - why would anyone ask me what my shirt says? MY SHIRT DOESN'T TALK. I mean, I am four years old and I have that one figured out. "Go pick out a book to read," Mom will say.
"I DON'T KNOW HOW TO READ," I will reply, because I don't. And frankly, I am too busy to learn.
I am not trying to be funny. In fact, when Mom starts to laugh, I usually point that out, loudly and repeatedly, until she apologizes...but I can still hear the laughing under her words.
The other night, though, I said something that made Mom laugh so hard that she cried (also confusing, to be honest), and she actually climbed up to reach the top shelf of her closet and brought out the dust-covered baby book she hasn't touched in over two years to write it down. (She'll probably just give me her log-in to facebook in lieu of anything meaningful.)
It was bedtime, so I was already feeling a little contentious. She was supervising the whole "go potty and put on your night time pants." (We call them "night time" pants to avoid the indignity of the term "pull ups" and also because I only wear them at night time, so it just makes more sense.)
So I put on my night time pants, and she said, "You know, you've been waking up dry every morning. You've been doing a great job of holding your pee-pee all night."
I gave her a startled, confused look, and then said, "I DON'T TOUCH IT WHILE I AM SLEEPING."
Because it's true, Diary. There are plenty of times when I do touch it, but I am relatively certain that I leave it well enough alone at night. At least for now.
Sincerely,
Justin Ryan Kilgore, Jr.
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