{gigantic sigh, heard round the world, or at least round my living room}
A good local friend, who is also a mom of a child on the autism spectrum AND a speech pathologist, loaned me a book recently. It's "House Rules", by Jodi Picoult. I should have known better, and my hubby even said so later (privately), but I graciously accepted the book and began to read it a few days later. I've read Jodi Picoult before, at least 3 of her other books, and I always am left feeling emotionally drained, even stunned sometimes---see: Handle With Care, about a young girl with a rare condition causing her bones to break at the slightest thing, etc. Talk about an emotional roller coaster.....her parents sue the OB, who also happens to be the mom's best friend. Oh yeah, good times.
And now we have House Rules, recommended to me because the main character has Asperger's Syndrome. Generally, I like seeing portrayals of these kind of characters in books, on TV, etc. because I'm curious to see how accurate they are, how much time the writer has (or has NOT) put into his research in creating the character. Well, Jodi Picoult has put her time in, that's for sure, and maybe that's why the book is so hard for me to read.
The main character, Jacob, is more severely affected by his (imaginary) Asperger's than is Mr. L, for what it's worth. Jacob's family has had to make many more accommodations in their daily lives because of his extreme need for order and routine---see: White Food Day (first of every month), avoidance of all things orange (including no parking next to an orange car, etc). You get the idea. But these aren't the things that get to me when I'm reading, it's the fact that Jacob is arrested and charged with the murder of his social-skills tutor. And the fact that he is communicatively and socially impaired, combined with the fact that the police and judicial system know NOTHING about autism or how to deal with him, scares the *#@# out of me.
Because he's 18, he's legally an adult, meaning that his mother can't be there to advocate for him, isn't allowed to make legal decisions for him, etc. But he is in no way competent to make his own decisions, despite what the police think which is only based on how brilliant he is and the fact that he can quote the Miranda rights verbatim. And it just keeps spiraling from there, horribly bad coincidence after misunderstanding after misinformation after terrible unfairness.....I know you get the idea. But somehow I can't stop reading.
Disclaimer: I am about 2/3 of the way through the book at this point. No I don't know how it ends yet, and please don't tell me. Let me break my own heart on my own time, ok? Surely, this brilliant young man who does remind me a bit of my own first-born cannot have really committed murder. Surely he will be exonerated, and the people involved will all be miraculously educated about autism and live the rest of their lives educating others......right? RIGHT?
Monday, August 9, 2010
Wednesday, August 4, 2010
time passages
Early August always brings on the flood of "well, this is the anniversary of the day that I _____________..........", and it all revolves around Mr. L's birth in 2001 and my abrupt, jarring introduction to preeclampsia. Yesterday was the first of many such days to come over the next couple of weeks--the anniversary of the day I went to an outdoor marching band exhibition and was bombarded by veteran Moms telling me to sit down and that I didn't look "well". Gee, just what a preggo lady wants to hear, thanks!
It was my first pregnancy, so how the hell was I supposed to know what it would feel like and what was "normal"? (oh how I hate that word) I kept telling them "I feel fine, really, I'm ok", but would humor them by sitting down in the lovely blue and white striped folding chair because they wouldn't take no for an answer. In 48 hours, I would be in a doctor's office being told that under NO circumstances could I teach school that fall (first day of school was only a day or so away) and that I should now consider myself "on bedrest", effective immediately. 96 hours after that, I was being prepped for a c-section. It all happened so fast, and by now, 9 years later, it's just one big blur in my mind.
Ever since that early August of 2001, I have had preeclampsia permanently stamped on my mind, my heart, and my physical body as well, in the form of 2 c-section scars and lingering high blood pressure. Along the way in this journey that I never chose, I have met so many amazing women who are fellow survivors of preeclampsia, and I am forever grateful for their friendship and the knowledge that I am not alone in what I have suffered. You ladies know who you are, and I consider you all my sisters, no matter how far away you may live. I can admit that my memories are fading a bit with time, and that the emotional pain of the preeclampsia experience is not as sharp or as fresh as it once was, thank goodness. However, it's still there, and here's how I know.....the twinge in my heart whenever I hear news of the healthy, safe delivery of a full-term baby by someone I know. I would never, ever wish my experience on anyone, and I don't begrudge other women their easy, happy pregnancies, their "natural" childbirth or their 1-night hospital stays followed by the joyous homecoming of mother and baby. But you'll cut me some slack when I point out that, no matter how happy I truly am for you, it still hurts, and that's the bottom line.
It was my first pregnancy, so how the hell was I supposed to know what it would feel like and what was "normal"? (oh how I hate that word) I kept telling them "I feel fine, really, I'm ok", but would humor them by sitting down in the lovely blue and white striped folding chair because they wouldn't take no for an answer. In 48 hours, I would be in a doctor's office being told that under NO circumstances could I teach school that fall (first day of school was only a day or so away) and that I should now consider myself "on bedrest", effective immediately. 96 hours after that, I was being prepped for a c-section. It all happened so fast, and by now, 9 years later, it's just one big blur in my mind.
Ever since that early August of 2001, I have had preeclampsia permanently stamped on my mind, my heart, and my physical body as well, in the form of 2 c-section scars and lingering high blood pressure. Along the way in this journey that I never chose, I have met so many amazing women who are fellow survivors of preeclampsia, and I am forever grateful for their friendship and the knowledge that I am not alone in what I have suffered. You ladies know who you are, and I consider you all my sisters, no matter how far away you may live. I can admit that my memories are fading a bit with time, and that the emotional pain of the preeclampsia experience is not as sharp or as fresh as it once was, thank goodness. However, it's still there, and here's how I know.....the twinge in my heart whenever I hear news of the healthy, safe delivery of a full-term baby by someone I know. I would never, ever wish my experience on anyone, and I don't begrudge other women their easy, happy pregnancies, their "natural" childbirth or their 1-night hospital stays followed by the joyous homecoming of mother and baby. But you'll cut me some slack when I point out that, no matter how happy I truly am for you, it still hurts, and that's the bottom line.
Friday, July 30, 2010
things that make you go hmmm....
Just tidbits today, stuff I've thought about in the last few days......
1. Heard the song "We're Not Gonna Take It" by Twisted Sister today (YAY for Sirius Ch. 8), and remembered back to the days in high school when that song first came out and we used to sing it at the top of our lungs:
We're not gonna take it
No, we ain't gonna take it
We're not gonna take it anymore
What, exactly, were we "not gonna take"? We lived in semi-suburbia, ordinary comfortable lives in ordinary comfortable homes. Oh, but we were teenagers, so that automatically means we were oppressed, right? ;) If that was oppressed, I think I'd like to be oppressed again!
2. Why is it that whenever I go to a friend's house for the first time, I come home feeling horrible and inadequate by comparison? Specifically, her house vs. my house, her level of "with-it-ness" vs. mine, her organization and wonderful Mom traits vs. my lack of organization and .....well, you get the idea. This happened today, but it's not the first time, nor will it be the last, I'm sure.
3. And while we're on that topic, am I the only one that believes that most foods and drinks are ok and not too terrible if consumed in moderation? Talk about feeling inadequate.......when you visit that friend and she's serving lunch, and casually drops into the conversation that "we're not ketchup people, but I think I have some you guys can use if you want" or "we're not condiment people either, but there might be some mustard around here.....". I do not ban foods for my kids, for the most part. Soda from time to time? Sure. Pizza? Damn straight! Ketchup AND mustard AND barbecue sauce to dip your chicken nuggets in? Certainly. A bowl full of Oreo cookies? Only if you agree to share some with me.......
4. How many years after a picture is taken does it start to look old or "dated"? How many years will it look ok, and then at what point will you start to think either:
A--Wow, look how young we were!
or
B--Oh my Lord, what WAS I thinking with that hairstyle/shirt/pants/gigantic earrings/Madonna-style white lace headband?
I've been married for just over 14 years (YAY for weddings Class of 1996!) I know that for many years after the wedding, I could look at the pictures and think that everyone looked "normal".....no wacky, dated hairstyles, no cringing at the out-of-style clothes, etc. Now, not so much, especially about the hair, but I don't know when we passed that imaginary line between "I look good" and "WTF?"
Discuss. Yes, you!
1. Heard the song "We're Not Gonna Take It" by Twisted Sister today (YAY for Sirius Ch. 8), and remembered back to the days in high school when that song first came out and we used to sing it at the top of our lungs:
We're not gonna take it
No, we ain't gonna take it
We're not gonna take it anymore
What, exactly, were we "not gonna take"? We lived in semi-suburbia, ordinary comfortable lives in ordinary comfortable homes. Oh, but we were teenagers, so that automatically means we were oppressed, right? ;) If that was oppressed, I think I'd like to be oppressed again!
2. Why is it that whenever I go to a friend's house for the first time, I come home feeling horrible and inadequate by comparison? Specifically, her house vs. my house, her level of "with-it-ness" vs. mine, her organization and wonderful Mom traits vs. my lack of organization and .....well, you get the idea. This happened today, but it's not the first time, nor will it be the last, I'm sure.
3. And while we're on that topic, am I the only one that believes that most foods and drinks are ok and not too terrible if consumed in moderation? Talk about feeling inadequate.......when you visit that friend and she's serving lunch, and casually drops into the conversation that "we're not ketchup people, but I think I have some you guys can use if you want" or "we're not condiment people either, but there might be some mustard around here.....". I do not ban foods for my kids, for the most part. Soda from time to time? Sure. Pizza? Damn straight! Ketchup AND mustard AND barbecue sauce to dip your chicken nuggets in? Certainly. A bowl full of Oreo cookies? Only if you agree to share some with me.......
4. How many years after a picture is taken does it start to look old or "dated"? How many years will it look ok, and then at what point will you start to think either:
A--Wow, look how young we were!
or
B--Oh my Lord, what WAS I thinking with that hairstyle/shirt/pants/gigantic earrings/Madonna-style white lace headband?
I've been married for just over 14 years (YAY for weddings Class of 1996!) I know that for many years after the wedding, I could look at the pictures and think that everyone looked "normal".....no wacky, dated hairstyles, no cringing at the out-of-style clothes, etc. Now, not so much, especially about the hair, but I don't know when we passed that imaginary line between "I look good" and "WTF?"
Discuss. Yes, you!
Wednesday, July 28, 2010
Hopeful Parents
In case you haven't discovered it yet, Hopeful Parents is a great website and community for families of kids with all kinds of special needs, disabilities, etc. You really should check it out, it's an amazing place! Every day there are new blog posts up, written by real-life Hopeful Parents (including yours truly.....I write on the 24th of every month). There is a forum/discussion section, and the organization is becoming a tax-exempt federally recognized group as well.
I'm so excited and honored to be a part of the Hopeful Parents community from its inception, and to be around to see where it goes into the future. If you read this blog, you are probably a Hopeful Parent yourself, so come on over and join us in advocacy, support, and understanding.
I'm so excited and honored to be a part of the Hopeful Parents community from its inception, and to be around to see where it goes into the future. If you read this blog, you are probably a Hopeful Parent yourself, so come on over and join us in advocacy, support, and understanding.
I'm in love with....
...the vacuum cleaner. Or more specifically, the vacuum cleaner attachments. Not quite to the level of fetishism, LOL, but pretty intense nevertheless. I'll try to elaborate, but there are some things you just can't explain....
We have Pergo floors in most of our house. This was my request from about 5 years ago, after seeing them in other houses and how great they looked while being super-easy to keep clean, etc. What I didn't take into account was how obsessive I would become about keeping them clean and keeping "bits" of any kind off of them. It just drives me to distraction to walk barefoot on the floor and feel that I've stepped on anything other than just plain floor. But I also live in a busy household, with 2 boys and an elderly cat.....which means food crumbs, stray cat litter, tidbits of grass/dirt/sand coming in on our shoes, etc. Remember the old Princess and the Pea story? Well, that's me with my feet on these floors--even the tiniest, microscopic speck on the floor makes me insane if I step on it.
So I sweep. A lot. I "swiffer". I steam-mop. And every day, several times a day, I vacuum. Vacuums are for carpet, you say? Only for the unimaginative, I say. I've found that nothing, no method of floor cleaning gives me the satisfaction that vacuuming does, and using the hose attachment is even better. The budding psychologist/therapist in me keeps trying to figure out why I feel this way, and I think I'm on to something.....what do you think?
Life is messy. MY life is very messy most of the time. Cluttered, dirty, far from perfect. Bits of unwanted crud all around, getting in my way, interfering with smooth progress from one place to another. Kind of like my floors.........
But now picture me with the vacuum, super-duper hose attachment firmly in hand, walking around the house just searching for dirt. Searching for crumbs, bits of grass, grains of sand that fell out of the boys' shoes. One minute, the floor is messy and covered with dirt. Next minute, vacuum power comes to the rescue and vanquishes the dirt, making it disappear! And everywhere I go, the same story....the all-powerful vacuum takes away all of the dirt, leaving the floor clean and uncluttered. If only the clutter in life were as easy to control and easy to remove.
We have Pergo floors in most of our house. This was my request from about 5 years ago, after seeing them in other houses and how great they looked while being super-easy to keep clean, etc. What I didn't take into account was how obsessive I would become about keeping them clean and keeping "bits" of any kind off of them. It just drives me to distraction to walk barefoot on the floor and feel that I've stepped on anything other than just plain floor. But I also live in a busy household, with 2 boys and an elderly cat.....which means food crumbs, stray cat litter, tidbits of grass/dirt/sand coming in on our shoes, etc. Remember the old Princess and the Pea story? Well, that's me with my feet on these floors--even the tiniest, microscopic speck on the floor makes me insane if I step on it.
So I sweep. A lot. I "swiffer". I steam-mop. And every day, several times a day, I vacuum. Vacuums are for carpet, you say? Only for the unimaginative, I say. I've found that nothing, no method of floor cleaning gives me the satisfaction that vacuuming does, and using the hose attachment is even better. The budding psychologist/therapist in me keeps trying to figure out why I feel this way, and I think I'm on to something.....what do you think?
Life is messy. MY life is very messy most of the time. Cluttered, dirty, far from perfect. Bits of unwanted crud all around, getting in my way, interfering with smooth progress from one place to another. Kind of like my floors.........
But now picture me with the vacuum, super-duper hose attachment firmly in hand, walking around the house just searching for dirt. Searching for crumbs, bits of grass, grains of sand that fell out of the boys' shoes. One minute, the floor is messy and covered with dirt. Next minute, vacuum power comes to the rescue and vanquishes the dirt, making it disappear! And everywhere I go, the same story....the all-powerful vacuum takes away all of the dirt, leaving the floor clean and uncluttered. If only the clutter in life were as easy to control and easy to remove.
Tuesday, July 27, 2010
who am I these days?
So since I've been away from blog-land for so long, I feel like this is an opportunity for me to re-focus on what I want this blog to be, the kind of things I want to post about, etc. And since I live such a thrilling, exotic lifestyle (wanna buy the Brooklyn Bridge?), I've got lots of amazing stuff to write about on a daily basis. ;)
Stuff like:
college, Part Deux
autism/Asperger Syndrome
ADHD
Music Therapy
preemies/preeclampsia
couponing (a new obsession...you'd be amazed!)
politics (progressive and proud of it!)
music
sports
Facebook
....and other scintillating, fascinating details of my daily life.
Today, my rant of the moment is about Facebook, which I have an intimate love affair with (and my 663 "friends"). I'm all into the whole "freedom to post and say what you want" part of FB, but occasionally I wish some of the people there would just think for half of a freaking second before they click "comment" and put their random/hurtful/prejudiced/judgmental/mean thoughts into written form. Others have just as much right to express their opinions as I do, but let's remember something, guys: There's a person, a living, breathing human behind each keyboard, and they have feelings. You may or may not really know that person, but she exists. (no, sitting beside her in sophomore World History in 1987 doesn't really count, but don't tell that to the 663).
I posted a few days ago on the wall of little E's new teacher for this school year. I heart her already, she is going to be a great fit for him this year, so saith the Mommy Instinct. Before last year ended, she'd responded positively to my request to have a brief meeting with her about Energizer over the summer. Experience has shown me that it is good for all concerned to fill the teachers in about my boys before the new year starts....saves everyone a lot of heartache as well as the need to re-invent the wheel every time. He's on meds, he sees a counselor, he has 2 different private therapists, he has a 504 plan, etc etc etc, and she needs to know all of this.
So, like the innocent, naive dummy that I am, I had the audacity to post on her wall and ask to look at a time for this quick meeting about E. Little did I know that I would be pounced on by people who don't know me or my children, but are "friends" of the teacher and are disturbed by the idea of meeting with a parent during the summer. Oh, and did I mention that one of these commenters is a former principal? Such lovely phrases as:
"...but they are just your careers, not your families, not your lives."
or
"You should NOT meet with parents over the summer! There is plenty of time to do that during the year. The summer needs to be for you and your family.. The only kids you should focus on are your own!!!!!!!!!"
Pardon me? EXCUSE ME? Just who do you think you're talking to? You obviously haven't seen my teaching certificate or my 14 years of experience in the field. You must have missed my wedding to another teacher, with 16 years in the classroom to his credit. I'm pretty sure I taught more students in my first 3 or 4 years than you have EVER taught, Ms. "Administrator". And bless your heart, you must never have had the privilege of being a parent of special needs kids, or knowing the unforgettable thrill of having the school office call you to say that your child choked another student hard enough to leave marks.
So let's just leave it at this. YOU DON'T KNOW ME, OR MY CHILDREN. Until you've held my boys and cried along with them during a meltdown, until you've had to give stimulant meds to your 4 year old, until you've spent 17 weeks at your children's bedsides in the NICU, until you've had to pick up your very big, very heavy son off of the ground in a public place during an Asperger's "moment", you'd better keep your self-righteous opinions to yourself. Step off, as they say, get the hell over yourself and stay out of my business.
Stuff like:
college, Part Deux
autism/Asperger Syndrome
ADHD
Music Therapy
preemies/preeclampsia
couponing (a new obsession...you'd be amazed!)
politics (progressive and proud of it!)
music
sports
....and other scintillating, fascinating details of my daily life.
Today, my rant of the moment is about Facebook, which I have an intimate love affair with (and my 663 "friends"). I'm all into the whole "freedom to post and say what you want" part of FB, but occasionally I wish some of the people there would just think for half of a freaking second before they click "comment" and put their random/hurtful/prejudiced/judgmental/mean thoughts into written form. Others have just as much right to express their opinions as I do, but let's remember something, guys: There's a person, a living, breathing human behind each keyboard, and they have feelings. You may or may not really know that person, but she exists. (no, sitting beside her in sophomore World History in 1987 doesn't really count, but don't tell that to the 663).
I posted a few days ago on the wall of little E's new teacher for this school year. I heart her already, she is going to be a great fit for him this year, so saith the Mommy Instinct. Before last year ended, she'd responded positively to my request to have a brief meeting with her about Energizer over the summer. Experience has shown me that it is good for all concerned to fill the teachers in about my boys before the new year starts....saves everyone a lot of heartache as well as the need to re-invent the wheel every time. He's on meds, he sees a counselor, he has 2 different private therapists, he has a 504 plan, etc etc etc, and she needs to know all of this.
So, like the innocent, naive dummy that I am, I had the audacity to post on her wall and ask to look at a time for this quick meeting about E. Little did I know that I would be pounced on by people who don't know me or my children, but are "friends" of the teacher and are disturbed by the idea of meeting with a parent during the summer. Oh, and did I mention that one of these commenters is a former principal? Such lovely phrases as:
"...but they are just your careers, not your families, not your lives."
or
"You should NOT meet with parents over the summer! There is plenty of time to do that during the year. The summer needs to be for you and your family.. The only kids you should focus on are your own!!!!!!!!!"
Pardon me? EXCUSE ME? Just who do you think you're talking to? You obviously haven't seen my teaching certificate or my 14 years of experience in the field. You must have missed my wedding to another teacher, with 16 years in the classroom to his credit. I'm pretty sure I taught more students in my first 3 or 4 years than you have EVER taught, Ms. "Administrator". And bless your heart, you must never have had the privilege of being a parent of special needs kids, or knowing the unforgettable thrill of having the school office call you to say that your child choked another student hard enough to leave marks.
So let's just leave it at this. YOU DON'T KNOW ME, OR MY CHILDREN. Until you've held my boys and cried along with them during a meltdown, until you've had to give stimulant meds to your 4 year old, until you've spent 17 weeks at your children's bedsides in the NICU, until you've had to pick up your very big, very heavy son off of the ground in a public place during an Asperger's "moment", you'd better keep your self-righteous opinions to yourself. Step off, as they say, get the hell over yourself and stay out of my business.
Monday, July 19, 2010
I'm back......
Well, here I am. 329 days since the last blog post, and now I'm back. Why the sabbatical? No real reason, no excuse, other than that old chestnut "life got in the way". The last post was on my 38th birthday, which also happened to be my first day of college classes. This is "College: Part Deux", by the way, 16 years after I got my degree, knew everything there was to know, and set out to conquer the world.
Anyway, I intend to be much more prolific around here in the future, and I'm sorry for just dropping out of sight like that. I'll do my best to give you the VERY abbreviated version of what has happened in the last 329 days. That is, if anyone is still around to read this blog anyway...........
I'm now officially halfway through the Music Therapy program, and I know without a doubt that this was the right decision for me to make for my life and my future. Two more semesters of classes, a 6 month internship, and I'm ready to be certified as an MT. I'll be 40 by then, but hey.........40 is the new 30, isn't that what they say? Or is it 50 is the new 40? Or pink is the new black? I can never keep that stuff straight.
Mr. Literal just finished 3rd grade (!) and Energizer finished Kindergarten. Both had good years, but continue to struggle in various ways. I'll write more about their school year adventures over the next few weeks. Next school year starts in slightly less than a month, and their teachers have been chosen (the ones I asked for!), so I've got high hopes for another good year.
So, again, sorry for being MIA.......or was it AWOL..........? But I'm back, and looking forward to reclaiming my spot in the blogosphere. :)
Anyway, I intend to be much more prolific around here in the future, and I'm sorry for just dropping out of sight like that. I'll do my best to give you the VERY abbreviated version of what has happened in the last 329 days. That is, if anyone is still around to read this blog anyway...........
I'm now officially halfway through the Music Therapy program, and I know without a doubt that this was the right decision for me to make for my life and my future. Two more semesters of classes, a 6 month internship, and I'm ready to be certified as an MT. I'll be 40 by then, but hey.........40 is the new 30, isn't that what they say? Or is it 50 is the new 40? Or pink is the new black? I can never keep that stuff straight.
Mr. Literal just finished 3rd grade (!) and Energizer finished Kindergarten. Both had good years, but continue to struggle in various ways. I'll write more about their school year adventures over the next few weeks. Next school year starts in slightly less than a month, and their teachers have been chosen (the ones I asked for!), so I've got high hopes for another good year.
So, again, sorry for being MIA.......or was it AWOL..........? But I'm back, and looking forward to reclaiming my spot in the blogosphere. :)
Sunday, August 23, 2009
Top 5 irrational fears about starting back to college
Classes start today, 11 am. No turning back now, right? Tons and tons of thoughts are flying in and out of my mind this weekend, and every so often is the thought "OMG I AM COMPLETELY CHANGING THE DIRECTION OF MY LIFE; AM I A TOTAL NUTCASE?"
So, with that in mind, here comes the list....in no particular order of irrationality or fear-ishness. (not a word, I know, LOL)
1. I will show up at the first class today with no shoes on. (I'll pause a moment while you collapse on the floor with laughter at my expense) I did not make this up just for your entertainment, I promise. I have this sort of dream before every big/new/stressful life event. I dreamt it in the days before my wedding, before starting College Adventure #1, before my first year of teaching, etc. And the terror associated with this dream is real, no doubt. Imagine it: You arrive for a momentous occasion, first impressions really matter, you're sitting in your desk and all of a sudden OMG I do not have shoes on!!!!!! How did I even get here like this? And even more bizarre.......what does a dream like this symbolize? Any dream interpreters out there?
2. I will be the oldest one in the room(s), professor included. Why in the flipping world that even matters to me is not clear, but it does. I already know that my primary supervising professor is a year younger, and she's got her doctorate in MT already. I got mine in preeclampsia, with a concentration in the autism spectrum and special-needs parenting. No fancy degree certificate on the wall though.....just scotch tape residue, the remains of Mr. L's endless lists that he simply MUST display all over the house.
3. You know that scene in Finding Nemo when the fish are trying to join the "East Australian Current" along with those sea turtles, but it's going SO fast and they just can't get in? Yep, what they said. When I think of all the things that have changed since the pre-internet days of my last time in college, I feel nauseous. Do people even take notes on actual paper any more? Do I need my laptop in class?
4. What the hell do I wear? Yes, this is of great importance. Gotta not look any of the following: too old, too fat, too dorky, too teacher-ish, too much like I'm trying to look young, too out of style, too dressy, too casual.......you get the idea. {sigh} I need a fashion consultant. Any volunteers?
5. There will be too much workload, too much writing/term papers, and I'll end up being MORE busy and more time away from my kids than I had before. I've already had to resign myself to sending them to the after-school care program 4 days per week this semester, based on my class schedule and how late the classes end. Yuck. I was looking forward to picking them up in the cute little carpool loop behind the school. Oh, and nearly $100/week for the afterschool program too........lovely.
Ok, I could go on listing forever, but I limited myself to 5 so that I can manage to not be late for the actual classes on the first day! Gotta go shower, put on the painstakingly chosen clothes, pack the bag with my supplies one more time, and drive headlong into this new phase of my life. Are any of you old enough to remember those old commercials for Nestea.......the Nestea plunge? LMAO at the thought of it, but that's pretty much what I'm doing today. Eyes closed, let go, fall backwards into a swimming pool and trust that it will be ok. I'll come out soaking wet, but hey, it's 90 degrees outside so who cares, right? ;)
So, with that in mind, here comes the list....in no particular order of irrationality or fear-ishness. (not a word, I know, LOL)
1. I will show up at the first class today with no shoes on. (I'll pause a moment while you collapse on the floor with laughter at my expense) I did not make this up just for your entertainment, I promise. I have this sort of dream before every big/new/stressful life event. I dreamt it in the days before my wedding, before starting College Adventure #1, before my first year of teaching, etc. And the terror associated with this dream is real, no doubt. Imagine it: You arrive for a momentous occasion, first impressions really matter, you're sitting in your desk and all of a sudden OMG I do not have shoes on!!!!!! How did I even get here like this? And even more bizarre.......what does a dream like this symbolize? Any dream interpreters out there?
2. I will be the oldest one in the room(s), professor included. Why in the flipping world that even matters to me is not clear, but it does. I already know that my primary supervising professor is a year younger, and she's got her doctorate in MT already. I got mine in preeclampsia, with a concentration in the autism spectrum and special-needs parenting. No fancy degree certificate on the wall though.....just scotch tape residue, the remains of Mr. L's endless lists that he simply MUST display all over the house.
3. You know that scene in Finding Nemo when the fish are trying to join the "East Australian Current" along with those sea turtles, but it's going SO fast and they just can't get in? Yep, what they said. When I think of all the things that have changed since the pre-internet days of my last time in college, I feel nauseous. Do people even take notes on actual paper any more? Do I need my laptop in class?
4. What the hell do I wear? Yes, this is of great importance. Gotta not look any of the following: too old, too fat, too dorky, too teacher-ish, too much like I'm trying to look young, too out of style, too dressy, too casual.......you get the idea. {sigh} I need a fashion consultant. Any volunteers?
5. There will be too much workload, too much writing/term papers, and I'll end up being MORE busy and more time away from my kids than I had before. I've already had to resign myself to sending them to the after-school care program 4 days per week this semester, based on my class schedule and how late the classes end. Yuck. I was looking forward to picking them up in the cute little carpool loop behind the school. Oh, and nearly $100/week for the afterschool program too........lovely.
Ok, I could go on listing forever, but I limited myself to 5 so that I can manage to not be late for the actual classes on the first day! Gotta go shower, put on the painstakingly chosen clothes, pack the bag with my supplies one more time, and drive headlong into this new phase of my life. Are any of you old enough to remember those old commercials for Nestea.......the Nestea plunge? LMAO at the thought of it, but that's pretty much what I'm doing today. Eyes closed, let go, fall backwards into a swimming pool and trust that it will be ok. I'll come out soaking wet, but hey, it's 90 degrees outside so who cares, right? ;)
Saturday, August 22, 2009
Facebook drama
I love Facebook, truly I do. I've reconnected with so many people from various stages of my life.......high school classmates that I'd forgotten even existed, former students I taught, coworkers, college friends, even former teachers of mine. And therein lies the drama.
I have the absolute highest respect for teachers. They do a mostly thankless job, for little money and even less credit in the eyes of many. I was fortunate to have quite a few incredible teachers in my time, and now that I've walked a few thousand miles in their shoes, I understand even more how wonderful they are! So you can imagine how over-the-moon I was a few weeks ago to have re-discovered my very first band director, thanks to the miracle of Facebook. I was in his classroom more than 25 years ago (gulp!), and I admired and loved him in the sweet way of a 6th grade girl. When we moved during the fall of my 7th grade year, I was devastated and just knew I wouldn't like any new band director I might get. I wanted to stay with Mr. M, it was as simple as that. So after all these years, to find him again on FB........amazing! And he even says he remembers me! :)
Well guess what? Mr. M is raving right-wing lunatic. {sigh} And I do mean raving, ranting, unhinged, conspiracy-theory lunatic. You know, "Obama is the antichrist and is out to get us all" kind of thing, and he's ruined our country in a mere 8 months. Oh, and don't forget that public schools are ALL a freakin' disaster (or "dead", his words) and no one who cares about their child or this country would ever set foot in one. Makes me wonder why he still teaches in one. Things that make you go hmmmm.........
I've UNfriended people on FB for less. Much less. Much MUCH less. I'm pretty much the polar opposite of where he stands in terms of my politics, and I do tend to post politically-oriented links and stuff on my FB page. I happen to proudly send my children to a wonderful public school (shout out to my AIMS peeps!), and am VERY proud to have voted for our President and to support his policies. And because FB is a world of my own design, I have been perfectly content to remove a "friend" or two when I've gotten nauseated one too many times at reading their drivel.
So if this were anyone else posting the "schools are evil and Obama is a disaster" crap, he'd have been long gone. I mean come on, what's one friend when you've got 447, LOL? But the whole teacher-respect thing is so ingrained in me that I can't even call the man by his first name, much less find the nerve to speak up and defend my position when it differs from his, as it does about 99.592760274% of the time. I'm an adult now, damn it, not a 6th grader. Hell, I'm older now than he was when I was in his band. But I can't make myself stand up to him and argue like I really want to, so I end up having to read his crap while biting my tongue until it bleeds. And I just "found" him again, can't stand the thought of the whole UNfriend thing.
So, blogworld friends......what's the answer? I know, I know, there is no good answer. Guess I'm gonna have to put up with it, or grow a backbone and decide to say something back to him one of these fine days when the preposterous rantings push me over the edge. I guess it's that old cliche: You can't go home again, or you can't find a teacher you idolized after 27 years and expect that he hasn't changed, or that you haven't. {sigh X 10000000000....}
I have the absolute highest respect for teachers. They do a mostly thankless job, for little money and even less credit in the eyes of many. I was fortunate to have quite a few incredible teachers in my time, and now that I've walked a few thousand miles in their shoes, I understand even more how wonderful they are! So you can imagine how over-the-moon I was a few weeks ago to have re-discovered my very first band director, thanks to the miracle of Facebook. I was in his classroom more than 25 years ago (gulp!), and I admired and loved him in the sweet way of a 6th grade girl. When we moved during the fall of my 7th grade year, I was devastated and just knew I wouldn't like any new band director I might get. I wanted to stay with Mr. M, it was as simple as that. So after all these years, to find him again on FB........amazing! And he even says he remembers me! :)
Well guess what? Mr. M is raving right-wing lunatic. {sigh} And I do mean raving, ranting, unhinged, conspiracy-theory lunatic. You know, "Obama is the antichrist and is out to get us all" kind of thing, and he's ruined our country in a mere 8 months. Oh, and don't forget that public schools are ALL a freakin' disaster (or "dead", his words) and no one who cares about their child or this country would ever set foot in one. Makes me wonder why he still teaches in one. Things that make you go hmmmm.........
I've UNfriended people on FB for less. Much less. Much MUCH less. I'm pretty much the polar opposite of where he stands in terms of my politics, and I do tend to post politically-oriented links and stuff on my FB page. I happen to proudly send my children to a wonderful public school (shout out to my AIMS peeps!), and am VERY proud to have voted for our President and to support his policies. And because FB is a world of my own design, I have been perfectly content to remove a "friend" or two when I've gotten nauseated one too many times at reading their drivel.
So if this were anyone else posting the "schools are evil and Obama is a disaster" crap, he'd have been long gone. I mean come on, what's one friend when you've got 447, LOL? But the whole teacher-respect thing is so ingrained in me that I can't even call the man by his first name, much less find the nerve to speak up and defend my position when it differs from his, as it does about 99.592760274% of the time. I'm an adult now, damn it, not a 6th grader. Hell, I'm older now than he was when I was in his band. But I can't make myself stand up to him and argue like I really want to, so I end up having to read his crap while biting my tongue until it bleeds. And I just "found" him again, can't stand the thought of the whole UNfriend thing.
So, blogworld friends......what's the answer? I know, I know, there is no good answer. Guess I'm gonna have to put up with it, or grow a backbone and decide to say something back to him one of these fine days when the preposterous rantings push me over the edge. I guess it's that old cliche: You can't go home again, or you can't find a teacher you idolized after 27 years and expect that he hasn't changed, or that you haven't. {sigh X 10000000000....}
Sunday, August 16, 2009
it's almost time
In tonight's late-night ponderings, I'm thinking over the fact that this summer has really big like one big time of preparation.........and that time is almost over.
Preparing for Mr. L to begin 3rd grade, which brings with it so many new things for him (3 teachers instead of 1, singing in the Chorus, being in the gifted program).
Preparing for the Energizer to enter Kindergarten. Hoping and praying that the teacher and classroom will be the right fit for him, that the medicine will last just long enough each day, that somehow we'll manage to avoid the dreaded "he just bit somebody" phone call.
And just as much, I'm preparing to re-enter school myself, 16 years after my first college graduation and with 14 years of teaching under my belt. This kind of preparation is just as much (or more) mental than it is practical. Ok, yeah......I did go buy a pack of highlighters today, and have rediscovered the joys of Sharpie fine point pens. And the $800 box of textbooks in the back of my van certainly cannot be ignored! But mentally, emotionally, I've had to do a bit of adjustment as you can imagine, and it's still ongoing. To be a student again, a learner; to open myself up to so much new information, new ideas and concepts; to be willing and brave enough to try new things at this point in my life (OMG, learning to play the guitar!)
And the other thing I've tried really, really hard to do is to get my home in some kind of respectable shape before the school year craziness starts. I didn't actually realize along the way that this was what I was doing, but now I see it. I've hung new shelving, gotten Mr. L a new chest of drawers, done insanely thorough vacuuming (including attachments!), had a yard sale, taken baby stuff to sell at the consignment store, worked on the flower beds and the kids' sandbox, and just generally tried to organize and declutter. Still have a long way to go, but it's amazingly better than when I started in May. Put it this way: You can actually see some portions of my kitchen counter now. It's dark green by the way; I'd sort of forgotten.
I think it comes down to this: My life is about to explode into its busiest time of the year. K is in marching band hell, so we basically don't see him from August to November 1. That means I'm mom, chauffeur, homework coach, discipline manager, grocery shopper, chef, maid, reader of Corduroy books and backyard beach volleyball star. Oh, and a full time student and music therapist-in-training too, just in case I won't already be busy enough. But, if on top of all of that, I pick up the boys and arrive home in the afternoon to a horribly messy, chaotic house, I will LOSE IT. Some days it might be 4:30 or even 5 pm before we get home, and I refuse to be greeted by a sink overflowing with dishes or floors covered an inch thick in cat hair and grass clippings. So, unconsciously, I've been cleaning, organizing, preparing for this new phase of life. I just had a strange thought.....it's almost like "nesting", isn't it? You know, the thing that I'm told that pregnant women do when they get close to full term and are nearly ready for baby's arrival? Hyper-focused organization, intense preparation, cleaning like a mad woman? Yep, that about covers it.
But you know what? That nesting time is almost over. Tomorrow, I take the boys to Meet the Teacher day, and on Tuesday they start school. I start the following Monday, August 24, which also happens to be my birthday. What a present, huh? Welcome to 38, here's your student ID card! :)
Preparing for Mr. L to begin 3rd grade, which brings with it so many new things for him (3 teachers instead of 1, singing in the Chorus, being in the gifted program).
Preparing for the Energizer to enter Kindergarten. Hoping and praying that the teacher and classroom will be the right fit for him, that the medicine will last just long enough each day, that somehow we'll manage to avoid the dreaded "he just bit somebody" phone call.
And just as much, I'm preparing to re-enter school myself, 16 years after my first college graduation and with 14 years of teaching under my belt. This kind of preparation is just as much (or more) mental than it is practical. Ok, yeah......I did go buy a pack of highlighters today, and have rediscovered the joys of Sharpie fine point pens. And the $800 box of textbooks in the back of my van certainly cannot be ignored! But mentally, emotionally, I've had to do a bit of adjustment as you can imagine, and it's still ongoing. To be a student again, a learner; to open myself up to so much new information, new ideas and concepts; to be willing and brave enough to try new things at this point in my life (OMG, learning to play the guitar!)
And the other thing I've tried really, really hard to do is to get my home in some kind of respectable shape before the school year craziness starts. I didn't actually realize along the way that this was what I was doing, but now I see it. I've hung new shelving, gotten Mr. L a new chest of drawers, done insanely thorough vacuuming (including attachments!), had a yard sale, taken baby stuff to sell at the consignment store, worked on the flower beds and the kids' sandbox, and just generally tried to organize and declutter. Still have a long way to go, but it's amazingly better than when I started in May. Put it this way: You can actually see some portions of my kitchen counter now. It's dark green by the way; I'd sort of forgotten.
I think it comes down to this: My life is about to explode into its busiest time of the year. K is in marching band hell, so we basically don't see him from August to November 1. That means I'm mom, chauffeur, homework coach, discipline manager, grocery shopper, chef, maid, reader of Corduroy books and backyard beach volleyball star. Oh, and a full time student and music therapist-in-training too, just in case I won't already be busy enough. But, if on top of all of that, I pick up the boys and arrive home in the afternoon to a horribly messy, chaotic house, I will LOSE IT. Some days it might be 4:30 or even 5 pm before we get home, and I refuse to be greeted by a sink overflowing with dishes or floors covered an inch thick in cat hair and grass clippings. So, unconsciously, I've been cleaning, organizing, preparing for this new phase of life. I just had a strange thought.....it's almost like "nesting", isn't it? You know, the thing that I'm told that pregnant women do when they get close to full term and are nearly ready for baby's arrival? Hyper-focused organization, intense preparation, cleaning like a mad woman? Yep, that about covers it.
But you know what? That nesting time is almost over. Tomorrow, I take the boys to Meet the Teacher day, and on Tuesday they start school. I start the following Monday, August 24, which also happens to be my birthday. What a present, huh? Welcome to 38, here's your student ID card! :)
Friday, August 14, 2009
This Lovely Life
I literally devoured this book......."This Lovely Life" by Vicki Forman.
Ok, well, I didn't actually tear out pages and consume them with a side of french fries. But I read through that book as fast as anything I've read recently, and that's saying something. 2 days, maybe 3 tops. Wanna hear about it? If you had a preemie, you do, trust me.
***warning, spoilers below! If you don't want to know how the book ends.......I guess you'd better go play some games on Facebook, or run to Starbucks, etc while we discuss. :)
This Lovely Life is the story of Forman's twin pregnancy, and delivery at 23 weeks. Her time in the NICU, the early loss of one baby and years of health problems and disabilities for the other. You can imagine that I found lots to relate to in her story.
Her babies (one boy, one girl) each weighed slightly less than my youngest son did at birth. And overall, both of my NICU experiences were "better" than hers were, if you can use such a word. But in Energizer's 11 weeks in the hospital, he suffered through so many of the same things as Forman's son Evan........I was just nodding my head when she spoke of brain bleeds, PDAs, oscillating vents, apnea monitors, the endless variety in the personalities of nurses and doctors, and the constant feeling of fear, dread and anxiety that NICU parents live under.
And out of all of the "yes, I remember, I understand" moments I had while reading this, one of the most poignant was her description of how your child, while in the NICU, never really feels like he's yours. I told K this on the morning after Mr. L was born......."I don't feel like there IS a him" was my response to being asked if I wanted to go up and see him. Forman points out that you, the mother, can do almost nothing for the child, especially at early, critical moments. You can't feed him; he doesn't take feeds yet anyway. You can't hold him, or if you can it's only in conjunction with an artificial schedule and only if a nurse agrees (it's a lot of work for her to take the baby out, after all). You can probably change a diaper, but heaven forbid if you actually throw the thing away without weighing it first. Result: This doesn't feel like your child, it's their child. You're visiting, you're observing, and then you go home or to your hotel and your/their baby goes on about his day and night whether you can be there or not. :(
Forman's book is probably considered controversial by some, and in all honesty it's a little disturbing to me at times too. I can't separate myself from my past, my experiences, so I know that my judgment is skewed, but.......when she tries to insist to the neonatologists that her babies should be DNR, I have a hard time understanding. I don't judge, really I don't, but I know that a DNR would not have been a choice I could have made. But she foresaw a future for her babies that would be filled with DIS............DISabilities, DISorders.........and she didn't know if she and her husband were up to the task. And, they had a preschool-aged daughter at this point, so that was an additional variable to consider.
As the first few days progressed though, they began to realize that a DNR was both impractical and not really what they wanted. After originally telling the NICU docs to discontinue all care (and finding that the docs didn't obey), and learning more about the babies' odds, etc, the DNR request was withdrawn. Forman's daughter lived just a few days, her son lived until age 8 although he continued to suffer health problems, seizures, and the loss of his sight due to ROP.
When I read something from a really good writer, I always run across passages that just "speak to me". Something about that phrase or sentence reaches out and grabs me, makes a connection with me through a deep understanding of where it's coming from, I guess. I've gone back and started to re-read the book, and am marking pages with those powerful phrases on them. Now, I want to share a few of them with you, for the sake of the NICU moms out there and the unfortunate sisterhood in which we find ourselves.
After Forman's baby daughter dies, family members are helping her with funeral arrangements. One day, at her home, Forman allows the phone to ring and does not answer. A family member criticizes, tells her she should answer. Her thought is this: "In my grief and panic, I also resented the fact that Curt still lived in a place where if you were good and honest and right, if you were polite and answered the phone and called people back, if you did all that, everything would turn out okay. Our time in that place had ended." Heartbreaking way of describing how different the world becomes once you lose a child, or are a NICU parent of a child with disabilities.
Soon thereafter, Forman's son takes a turn for the worse and his sats dip drastically. The doctor calls her back to the hospital at night, and she tells the story of what it's like to watch that O2 sats number on the monitor........."this was also the machine that sounded an alarm every time the saturations went below a certain number, usually 85. This was the machine I followed intensely in those first few weeks, as if by counting the numbers, I might also watch Evan survive......I touched my son's inch-long foot and saw the numbers go down even farther......."
Oh how I remember this. I would look at that O2 number and "will" it to go up, or to stay at a certain level and not dip below. I've never concentrated on anything so hard in my life, just focused on that screen and that number as if by the force of my thoughts I could make the number go where I wanted. And all that you want to do, when your child is in distress, is to help in some way, ANY way. You can't pick him up, you can't rock him and console him and make it all better like Moms should do. The worst thing of all is when you do the little you can, like maybe put your hand on the baby's back, head, leg, etc, and the result is that the number goes DOWN instead of up. The guilt of that feeling, knowing that I'd caused a desat due to overstimulation or whatever, will stay with me forever. :(
Part of the book consists of Forman's journal entries that she wrote during those NICU days, and it's a window into exactly what she thought and felt at that time. The August 30 entry goes like this:
"I do fine until I compare Evan to the others, the babies that arrive and depart, those not on a ventilator or oxygen, the nearly full-term babies. Monsters, I call them. Monster babies. My walk to the neonatal unit takes me past the nursery, where a fresh crop of newborns appears daily. Even harder is my glimpse down Labor and Delivery. Mothers-to-be stand waiting for their turn at birth. I remember seeing a pregnant woman the day after I gave birth to the twins and feeling so confused: Why me, why not her? How long will it take for that confusion to go away?
Thirty-two week twins arrived in the nursery the other day--I heard the nurses discussing the mother's labor, how the doctor had planned to deliver them soon. Thirty-two weeks? A whole 8 weeks longer than I was able to keep Evan and Ellie.....To accept all this, everything else needs to fall away: the pregnant women, the full-term babies, the preemies older than mine. In any comparison, I come up short, as does my son. It does him (and me) no good to dwell on this, to resent being so much at the bottom rung, to wish another super-preemie would show up so that I could feel better. Nothing I can do will make Evan bigger and better, able to hold his own against the monster babies. We're alone in this."
Aaah, yes. The comfort of recognition, of understanding, of saying "been there, done that." And no, my sons weren't born as early as Evan, or quite as small, and our "outcome" in terms of health and development was certainly better, luckier, however you want to put it. But nonetheless, everything else has not "fallen away" for me yet. Reading this book helps, because Forman comes to an amazing acceptance of her situation and of Evan's reality. And I do mean amazing. So many people have said to me over the years "I don't know how you do it, I couldn't be so strong" etc. But I feel like I should say those same things to Vicki Forman. I've never met her, probably never will, but I do want to thank her for sharing this story and helping us all to know that we are NOT alone in this journey of preemie parenting.
**Excerpts taken from "This Lovely Life" by Vicki Forman, copyright 2009 by Mariner Books.
Ok, well, I didn't actually tear out pages and consume them with a side of french fries. But I read through that book as fast as anything I've read recently, and that's saying something. 2 days, maybe 3 tops. Wanna hear about it? If you had a preemie, you do, trust me.
***warning, spoilers below! If you don't want to know how the book ends.......I guess you'd better go play some games on Facebook, or run to Starbucks, etc while we discuss. :)
This Lovely Life is the story of Forman's twin pregnancy, and delivery at 23 weeks. Her time in the NICU, the early loss of one baby and years of health problems and disabilities for the other. You can imagine that I found lots to relate to in her story.
Her babies (one boy, one girl) each weighed slightly less than my youngest son did at birth. And overall, both of my NICU experiences were "better" than hers were, if you can use such a word. But in Energizer's 11 weeks in the hospital, he suffered through so many of the same things as Forman's son Evan........I was just nodding my head when she spoke of brain bleeds, PDAs, oscillating vents, apnea monitors, the endless variety in the personalities of nurses and doctors, and the constant feeling of fear, dread and anxiety that NICU parents live under.
And out of all of the "yes, I remember, I understand" moments I had while reading this, one of the most poignant was her description of how your child, while in the NICU, never really feels like he's yours. I told K this on the morning after Mr. L was born......."I don't feel like there IS a him" was my response to being asked if I wanted to go up and see him. Forman points out that you, the mother, can do almost nothing for the child, especially at early, critical moments. You can't feed him; he doesn't take feeds yet anyway. You can't hold him, or if you can it's only in conjunction with an artificial schedule and only if a nurse agrees (it's a lot of work for her to take the baby out, after all). You can probably change a diaper, but heaven forbid if you actually throw the thing away without weighing it first. Result: This doesn't feel like your child, it's their child. You're visiting, you're observing, and then you go home or to your hotel and your/their baby goes on about his day and night whether you can be there or not. :(
Forman's book is probably considered controversial by some, and in all honesty it's a little disturbing to me at times too. I can't separate myself from my past, my experiences, so I know that my judgment is skewed, but.......when she tries to insist to the neonatologists that her babies should be DNR, I have a hard time understanding. I don't judge, really I don't, but I know that a DNR would not have been a choice I could have made. But she foresaw a future for her babies that would be filled with DIS............DISabilities, DISorders.........and she didn't know if she and her husband were up to the task. And, they had a preschool-aged daughter at this point, so that was an additional variable to consider.
As the first few days progressed though, they began to realize that a DNR was both impractical and not really what they wanted. After originally telling the NICU docs to discontinue all care (and finding that the docs didn't obey), and learning more about the babies' odds, etc, the DNR request was withdrawn. Forman's daughter lived just a few days, her son lived until age 8 although he continued to suffer health problems, seizures, and the loss of his sight due to ROP.
When I read something from a really good writer, I always run across passages that just "speak to me". Something about that phrase or sentence reaches out and grabs me, makes a connection with me through a deep understanding of where it's coming from, I guess. I've gone back and started to re-read the book, and am marking pages with those powerful phrases on them. Now, I want to share a few of them with you, for the sake of the NICU moms out there and the unfortunate sisterhood in which we find ourselves.
After Forman's baby daughter dies, family members are helping her with funeral arrangements. One day, at her home, Forman allows the phone to ring and does not answer. A family member criticizes, tells her she should answer. Her thought is this: "In my grief and panic, I also resented the fact that Curt still lived in a place where if you were good and honest and right, if you were polite and answered the phone and called people back, if you did all that, everything would turn out okay. Our time in that place had ended." Heartbreaking way of describing how different the world becomes once you lose a child, or are a NICU parent of a child with disabilities.
Soon thereafter, Forman's son takes a turn for the worse and his sats dip drastically. The doctor calls her back to the hospital at night, and she tells the story of what it's like to watch that O2 sats number on the monitor........."this was also the machine that sounded an alarm every time the saturations went below a certain number, usually 85. This was the machine I followed intensely in those first few weeks, as if by counting the numbers, I might also watch Evan survive......I touched my son's inch-long foot and saw the numbers go down even farther......."
Oh how I remember this. I would look at that O2 number and "will" it to go up, or to stay at a certain level and not dip below. I've never concentrated on anything so hard in my life, just focused on that screen and that number as if by the force of my thoughts I could make the number go where I wanted. And all that you want to do, when your child is in distress, is to help in some way, ANY way. You can't pick him up, you can't rock him and console him and make it all better like Moms should do. The worst thing of all is when you do the little you can, like maybe put your hand on the baby's back, head, leg, etc, and the result is that the number goes DOWN instead of up. The guilt of that feeling, knowing that I'd caused a desat due to overstimulation or whatever, will stay with me forever. :(
Part of the book consists of Forman's journal entries that she wrote during those NICU days, and it's a window into exactly what she thought and felt at that time. The August 30 entry goes like this:
"I do fine until I compare Evan to the others, the babies that arrive and depart, those not on a ventilator or oxygen, the nearly full-term babies. Monsters, I call them. Monster babies. My walk to the neonatal unit takes me past the nursery, where a fresh crop of newborns appears daily. Even harder is my glimpse down Labor and Delivery. Mothers-to-be stand waiting for their turn at birth. I remember seeing a pregnant woman the day after I gave birth to the twins and feeling so confused: Why me, why not her? How long will it take for that confusion to go away?
Thirty-two week twins arrived in the nursery the other day--I heard the nurses discussing the mother's labor, how the doctor had planned to deliver them soon. Thirty-two weeks? A whole 8 weeks longer than I was able to keep Evan and Ellie.....To accept all this, everything else needs to fall away: the pregnant women, the full-term babies, the preemies older than mine. In any comparison, I come up short, as does my son. It does him (and me) no good to dwell on this, to resent being so much at the bottom rung, to wish another super-preemie would show up so that I could feel better. Nothing I can do will make Evan bigger and better, able to hold his own against the monster babies. We're alone in this."
Aaah, yes. The comfort of recognition, of understanding, of saying "been there, done that." And no, my sons weren't born as early as Evan, or quite as small, and our "outcome" in terms of health and development was certainly better, luckier, however you want to put it. But nonetheless, everything else has not "fallen away" for me yet. Reading this book helps, because Forman comes to an amazing acceptance of her situation and of Evan's reality. And I do mean amazing. So many people have said to me over the years "I don't know how you do it, I couldn't be so strong" etc. But I feel like I should say those same things to Vicki Forman. I've never met her, probably never will, but I do want to thank her for sharing this story and helping us all to know that we are NOT alone in this journey of preemie parenting.
**Excerpts taken from "This Lovely Life" by Vicki Forman, copyright 2009 by Mariner Books.
Sunday, August 9, 2009
miracle baby, year 8
Not quite a wordless Wednesday here, but today's post is going to consist mostly of pictures........a trip through time, the evolution of my oldest son. His growth into quite a smart, handsome and talented young man, despite his preemie challenges and the autism-spectrum struggles he still faces.
Happy Birthday Mr. Literal! I could never have imagined, on August 10, 2001, the amazing, scary and uncharted roads we'd travel with you. I sat at your bedside in the hospital on 9/11, have driven the wheels off of my van in taking you to therapy appointments and doctor's visits, and proudly watched you graduate from preschool and go on to be selected for the Chorus and the gifted program at your school. Being your mother has made ME so much of a better person than I ever was before, and I'm constantly learning from the many things you have to teach me. I love you more than I can put into words, and I am so incredibly proud to be your mother.
Happy Birthday Mr. Literal! I could never have imagined, on August 10, 2001, the amazing, scary and uncharted roads we'd travel with you. I sat at your bedside in the hospital on 9/11, have driven the wheels off of my van in taking you to therapy appointments and doctor's visits, and proudly watched you graduate from preschool and go on to be selected for the Chorus and the gifted program at your school. Being your mother has made ME so much of a better person than I ever was before, and I'm constantly learning from the many things you have to teach me. I love you more than I can put into words, and I am so incredibly proud to be your mother.
Tuesday, August 4, 2009
autism angels
Have you heard that term before? Not sure where I ran across it first-- probably in an online forum--but I can't get the phrase out of my head today. The best way I can describe an "autism angel" is that it's someone who makes a positive difference in the life of a child on the autism spectrum. Even more so, it's someone who isn't looking for accolades or glory, just doing their job, doing what they consider ordinary, but it's oh-so-EXTRAordinary to us, the families of those ASD kids.
When I stop and look, I can see these amazing angels all around me, and I'm humbled by how fortunate we are. Like the sweet concession stand guy at the minor league baseball game last Sunday night.....or should I say, the NONgame. It rained, and rained, and rained, and we stood there under an awning for an hour hoping it would stop. Dreading the moment we knew was coming, when we'd have to tell Mr. L that the game was called off. And it was, and we did, and he did.........meltdown, that is. Crying, sobbing, almost wailing. He'd asked to go to this game for his upcoming birthday, we splurged for seats right behind home plate, and now there's no game. The concession stand guy motioned K over, and gave him a bag of cotton candy for Mr. L, to try and help us I guess. I can't say that the meltdown was completely stopped in its tracks, but the cotton candy was a definite distraction, and that's almost always good. Bless you, nameless concession stand vendor!
Or how about Mr. L's 2nd grade teacher last year? The sweet young lady who freely admitted that she had to look up what Asperger's Syndrome was after I told her about Mr. L. Out of all of her great qualities, the one thing I can say that was best is that she "gets him", if you know what I mean. She's patient, listens to him even when he takes forEVER to get to the point of a story, and has learned just how to handle him with the kid gloves that are often required if you want to avoid meltdowns. And best of all? After telling me in the year-end IEP meeting that she'd think through the 3rd grade teachers and decide on one to recommend to us, she did just that. Went and spoke to that teacher privately, gave her background info and suggestions, and recommended to the school that Mr. L be placed in that class. :)
That new 3rd grade teacher even earned a spot on my autism angel list! Today, we got a postcard in the mail from her, addressed to Mr. L. It welcomed him to her class, assures him they'll have a "super year" and she is so excited to start, etc. He's been apprehensive, and I've tried and tried to tell him to give 3rd grade a chance, see what it's like before you make up your mind that it's hard, teachers are mean, etc. But after reading the postcard, he said something like "now, maybe I will begin to believe her, that it WILL be a super year". :) 4 sentences on a postcard accomplished more than I have all summer!
I could keep on listing, but I'm going to sum it all up by telling you about one especially priceless autism angel---Mr. L's baseball coach from this season. He's a pretty young guy, single, drives a cool sports car, you get the idea. K and I decided from the start not to "come out" to him about Mr. L, just to go along and see how things progressed. If he needed to know, we'd tell. As it turned out, we didn't tell until after the season ended.
But Mr. L demonstrated his fondness for meltdowns early on in the season, and Coach T quickly realized how close to the edge Mr. L stays.......one strikeout, one dropped ball, and you could be witnessing an unstoppable screaming, hitting, wailing explosion. He took extra care to be nothing but positive and encouraging to Mr. L, even letting Mr. L throw the ball at him after Mr. L was hit by one of the pitches. That broke the spell of the meltdown somehow, and made him laugh, and then everything was ok again.
During the season, in casual conversation, he learned that Mr. L loves Lakers basketball. Coach T had seen the Lakers in person a few years ago, and so he brought Mr. L some of his up-close pictures of Kobe Bryant. And now, that the season is over........well, this week I was told about yet another angelic act from the coach, and I just about started crying. Coach T plays adult softball, and as it turns out, his team plays against the team of Mr. L's former 2nd grade teacher (see above)! So she emailed us, told us she'd seen him, and that he told her the story of the playoff game that ended Mr. L's season. He was the last batter, last out, of the entire freaking season for his team. :( Coach T told the teacher that he was actually praying as he pitched that last ball to Mr. L. That he'd never wanted someone to hit the ball and get on base so badly in his life. I know that's how I felt, but to know that he did too.......
Coach T, your halo is on its way. Not a coincidence, me thinks, that your team was called the Angels. And for you, the concession stand guy, the teachers, the lady at the baseball clinic that gave us a T-shirt during the collapsing-on-the-ground meltdown, and all the rest of our autism angels.......you have my unending thanks and gratitude. Your real reward is in Heaven.
When I stop and look, I can see these amazing angels all around me, and I'm humbled by how fortunate we are. Like the sweet concession stand guy at the minor league baseball game last Sunday night.....or should I say, the NONgame. It rained, and rained, and rained, and we stood there under an awning for an hour hoping it would stop. Dreading the moment we knew was coming, when we'd have to tell Mr. L that the game was called off. And it was, and we did, and he did.........meltdown, that is. Crying, sobbing, almost wailing. He'd asked to go to this game for his upcoming birthday, we splurged for seats right behind home plate, and now there's no game. The concession stand guy motioned K over, and gave him a bag of cotton candy for Mr. L, to try and help us I guess. I can't say that the meltdown was completely stopped in its tracks, but the cotton candy was a definite distraction, and that's almost always good. Bless you, nameless concession stand vendor!
Or how about Mr. L's 2nd grade teacher last year? The sweet young lady who freely admitted that she had to look up what Asperger's Syndrome was after I told her about Mr. L. Out of all of her great qualities, the one thing I can say that was best is that she "gets him", if you know what I mean. She's patient, listens to him even when he takes forEVER to get to the point of a story, and has learned just how to handle him with the kid gloves that are often required if you want to avoid meltdowns. And best of all? After telling me in the year-end IEP meeting that she'd think through the 3rd grade teachers and decide on one to recommend to us, she did just that. Went and spoke to that teacher privately, gave her background info and suggestions, and recommended to the school that Mr. L be placed in that class. :)
That new 3rd grade teacher even earned a spot on my autism angel list! Today, we got a postcard in the mail from her, addressed to Mr. L. It welcomed him to her class, assures him they'll have a "super year" and she is so excited to start, etc. He's been apprehensive, and I've tried and tried to tell him to give 3rd grade a chance, see what it's like before you make up your mind that it's hard, teachers are mean, etc. But after reading the postcard, he said something like "now, maybe I will begin to believe her, that it WILL be a super year". :) 4 sentences on a postcard accomplished more than I have all summer!
I could keep on listing, but I'm going to sum it all up by telling you about one especially priceless autism angel---Mr. L's baseball coach from this season. He's a pretty young guy, single, drives a cool sports car, you get the idea. K and I decided from the start not to "come out" to him about Mr. L, just to go along and see how things progressed. If he needed to know, we'd tell. As it turned out, we didn't tell until after the season ended.
But Mr. L demonstrated his fondness for meltdowns early on in the season, and Coach T quickly realized how close to the edge Mr. L stays.......one strikeout, one dropped ball, and you could be witnessing an unstoppable screaming, hitting, wailing explosion. He took extra care to be nothing but positive and encouraging to Mr. L, even letting Mr. L throw the ball at him after Mr. L was hit by one of the pitches. That broke the spell of the meltdown somehow, and made him laugh, and then everything was ok again.
During the season, in casual conversation, he learned that Mr. L loves Lakers basketball. Coach T had seen the Lakers in person a few years ago, and so he brought Mr. L some of his up-close pictures of Kobe Bryant. And now, that the season is over........well, this week I was told about yet another angelic act from the coach, and I just about started crying. Coach T plays adult softball, and as it turns out, his team plays against the team of Mr. L's former 2nd grade teacher (see above)! So she emailed us, told us she'd seen him, and that he told her the story of the playoff game that ended Mr. L's season. He was the last batter, last out, of the entire freaking season for his team. :( Coach T told the teacher that he was actually praying as he pitched that last ball to Mr. L. That he'd never wanted someone to hit the ball and get on base so badly in his life. I know that's how I felt, but to know that he did too.......
Coach T, your halo is on its way. Not a coincidence, me thinks, that your team was called the Angels. And for you, the concession stand guy, the teachers, the lady at the baseball clinic that gave us a T-shirt during the collapsing-on-the-ground meltdown, and all the rest of our autism angels.......you have my unending thanks and gratitude. Your real reward is in Heaven.
Thursday, July 30, 2009
Ok, NOW I've got something
....and it's about health care. Those 2 words are ALL over the news, the internet, and every other conceivable place these days, as President Obama and the Congress struggle over "reform" of the US health care system. So in my typical nerd fashion, I've been thinking over this topic, and there are lot of things I don't understand. I'm gonna throw some of them out here, and if you have any health care background or actual knowledge of the topic (as opposed to my ramblings, LOL), please chime in and educate me. :)
****Disclaimer****
I am a teacher by trade, and a mom. Not a nurse, doctor, insurance agent, accountant, or anything else that might give me actual understanding of the following topic. The ideas to be stated here are mine and not the intellectual property of anyone who understands how the system truly works!
Since becoming an adult, I've had exactly ONE kind of health insurance--the kind offered to employees of my state. As a teacher, it was just a given that I'd enroll in this insurance when hired, and I've kept it ever since. When I stopped being a state employee (at Mr. L's birth), K just took us onto his state-employee policy, and now he covers all 4 of us. So I'll freely admit to not being an expert on the various types of policies, coverage, or options.
Our insurance is pretty good, I suppose, as these things go. Even with the catastrophic health situations that have occurred for us in the last 8 years, we've not had to declare bankruptcy or sell any vital organs to pay anything that insurance didn't cover, etc. And because the boys were born in a state hospital, and this is the state insurance..........they scratch each other's backs, I suppose, and charge lower rates to each other than they would ordinarily. Energizer is the one in our family for whom the insurance has paid the most over the course of his life.....his total is about $175,000 right now, lifetime. And that covers a traumatic birth at 27 weeks, and 11 weeks of hospitalization. Mr. L's is about $100,000, mine's about $40,000. K hasn't used it nearly as much, since he's exempt from the whole pregnancy/childbirth/life-threatening illness thing.
But as I strain my brain to try and understand the ongoing debate over reforming the system, I've concluded that I must not really grasp the way things work, and why they work that way. We pay thousands of dollars per year in premiums for this insurance, whether we use the coverage or not. If we went into a typical doctor's office, clinic, etc, the first question we'd be asked is "do you have insurance?" If we said no, we'd likely be denied care. We could go to a free clinic (some areas have them), or the hospital emergency room, and we'd be treated no matter what, right? Am I pretty close so far?
Further, I believe it's true that insurance companies do not pay the doctors/hospitals the same cost for treatment that is actually billed, or what I would pay if I did it on my own. Say I needed to have a suspicious "spot" removed at the dermatologist, as I did back in the spring. I have the procedure done, the doctor bills me AND the insurance company. They'll state that the procedure cost $189 dollars, let's say, but that the "estimated insurance contribution" is $77. And I owe the rest. Or is it just 20% of the rest? Or is there a copay, then 20%? So somewhere along the line, someone's determined that what I had done is worth $189 and they charge that, but someone ELSE (likely with no medical degree) decides it's really only worth $77, and that's all they'll pay. But if I have already paid my "out of pocket maximum" for the year, then the insurance will STILL only pay $77........and the dermatologist just takes that and considers the account paid. Less than half of what was charged, but that's ok somehow. But if, by some strange chance, I did not have insurance YET was actually treated by this doctor, you can bet your sweet %&*#$ that I'd be paying the full $189, or becoming intimately acquainted with collection agencies.
How did we get to this point? It wasn't always like this, you know. Think back to old TV shows or movies you've watched about the Wild West or Little House on the Prairie. Back then, if you were sick or hurt, you got the doctor to come and he did what he could for you, which probably wasn't much that actually helped. You may not have had money to pay the doctor, but there was no such thing as insurance. So what would you do? You might give the doctor a chicken, or a bushel of apples, something you knitted or something you baked. How the hell did the system evolve from that to this?
The only thing I can come up with is this: As technology has evolved, and medical knowledge has improved, costs increased. In Laura Ingalls' day, it didn't matter if you couldn't afford intricate surgeries or expensive therapies because those things didn't even exist! So as costs increased, somebody thought up the idea of issuing "health insurance" to help cover the costs. People already had fire insurance, even back to the 1700s, so the idea was already out there. A few people got this new-fangled insurance, most didn't. Then more chose to get it, then more, and costs continued to go up. And as doctors raised their prices, charging more for the same service (whether warranted or not), the suits at the insurance companies did NOT raise the amount they'd pay for that same service. But the doctors took it anyway, figuring they'd still make out ok with that lesser amount AND that the people who weren't insured would be paying the higher rate anyway.
The premiums for insurance kept going up as well, even though the amounts they'd pay for your care stayed flat. Premiums reached a point that many people couldn't even fully pay for them, so employers began to "subsidize" the coverage for their workers. Then that got to be too expensive for the companies, especially small ones, so some began to drop their workers' coverage or require workers to pay 100% of premiums. Yet somehow it's reached a point that everyone is expected to....nay, required to have insurance. How did this happen? Costs just keep going up and up and up, so doctors figure that NO ONE could pay the full amount on their own...therefore, insurance is a must if they ever plan to get paid.
Here are some radical thoughts I've had: (bear with me, they might seem insane)
How much more money to spend on my family's health care would I have if we didn't pay for insurance premiums every month? Couldn't I use that $4,000-$5,000 per year to pay for routine care, and even a good bit of care beyond just checkups? Could the whole insurance thing just be scrapped altogether, or at least made much more optional than it now appears to be?
If doctors are ok with accepting insurance payments that are FAR below the billed amount that they charge for a service, couldn't they just charge that lesser amount to start with? If they can cover their costs with the $77 for my dermatology visit, why are they charging nearly 3 times that? When people complain so much about the "high cost of health care" and the fact that many do not seek the care they need because of cost, it has to make you wonder WHY the costs are so high? If the $77 rate is good enough for Blue Cross to pay, it should be good enough for me to pay too.
Well, I haven't created world peace or solved the pressing problems of our time. All that I've done is show how little I know about the topic of our health care system and its need for reform. But it does need reform, that's clear. Preventative and routine care is important, and everyone should be able to receive that, the way I see it. Even without insurance. If costs were more reasonable, it would put this kind of care within reach of a lot more people. I just wish, though, that the people "in the know" who are actually going to create, debate, and vote on any reform plans would come to this daunting task with an open mind, open heart, and caring spirit. A life is not worth less or less in need of saving just because that person is poor.....now, what can we do to make sure appropriate care is available to all, not just some?
And the Rush Limbaugh/Glenn Beck/Bill O'Reillys of the world......SHUT UP! Quit spreading your crap about things that the health care proposals in Washington do NOT include! The bill does not require elderly people to make a plan with a government nurse about when and how they want to die. Please. :( Nor does it plan to "ration" care for anyone, or pay for care for illegal immigrants, or for abortions. So just stop the scare tactics, and try to actually use your brain and THINK about the topic at hand rather than spouting off ridiculous claims that just polarize the country even further.
So how was that? Too much of a heavy-duty topic for a Friday night? ;)
****Disclaimer****
I am a teacher by trade, and a mom. Not a nurse, doctor, insurance agent, accountant, or anything else that might give me actual understanding of the following topic. The ideas to be stated here are mine and not the intellectual property of anyone who understands how the system truly works!
Since becoming an adult, I've had exactly ONE kind of health insurance--the kind offered to employees of my state. As a teacher, it was just a given that I'd enroll in this insurance when hired, and I've kept it ever since. When I stopped being a state employee (at Mr. L's birth), K just took us onto his state-employee policy, and now he covers all 4 of us. So I'll freely admit to not being an expert on the various types of policies, coverage, or options.
Our insurance is pretty good, I suppose, as these things go. Even with the catastrophic health situations that have occurred for us in the last 8 years, we've not had to declare bankruptcy or sell any vital organs to pay anything that insurance didn't cover, etc. And because the boys were born in a state hospital, and this is the state insurance..........they scratch each other's backs, I suppose, and charge lower rates to each other than they would ordinarily. Energizer is the one in our family for whom the insurance has paid the most over the course of his life.....his total is about $175,000 right now, lifetime. And that covers a traumatic birth at 27 weeks, and 11 weeks of hospitalization. Mr. L's is about $100,000, mine's about $40,000. K hasn't used it nearly as much, since he's exempt from the whole pregnancy/childbirth/life-threatening illness thing.
But as I strain my brain to try and understand the ongoing debate over reforming the system, I've concluded that I must not really grasp the way things work, and why they work that way. We pay thousands of dollars per year in premiums for this insurance, whether we use the coverage or not. If we went into a typical doctor's office, clinic, etc, the first question we'd be asked is "do you have insurance?" If we said no, we'd likely be denied care. We could go to a free clinic (some areas have them), or the hospital emergency room, and we'd be treated no matter what, right? Am I pretty close so far?
Further, I believe it's true that insurance companies do not pay the doctors/hospitals the same cost for treatment that is actually billed, or what I would pay if I did it on my own. Say I needed to have a suspicious "spot" removed at the dermatologist, as I did back in the spring. I have the procedure done, the doctor bills me AND the insurance company. They'll state that the procedure cost $189 dollars, let's say, but that the "estimated insurance contribution" is $77. And I owe the rest. Or is it just 20% of the rest? Or is there a copay, then 20%? So somewhere along the line, someone's determined that what I had done is worth $189 and they charge that, but someone ELSE (likely with no medical degree) decides it's really only worth $77, and that's all they'll pay. But if I have already paid my "out of pocket maximum" for the year, then the insurance will STILL only pay $77........and the dermatologist just takes that and considers the account paid. Less than half of what was charged, but that's ok somehow. But if, by some strange chance, I did not have insurance YET was actually treated by this doctor, you can bet your sweet %&*#$ that I'd be paying the full $189, or becoming intimately acquainted with collection agencies.
How did we get to this point? It wasn't always like this, you know. Think back to old TV shows or movies you've watched about the Wild West or Little House on the Prairie. Back then, if you were sick or hurt, you got the doctor to come and he did what he could for you, which probably wasn't much that actually helped. You may not have had money to pay the doctor, but there was no such thing as insurance. So what would you do? You might give the doctor a chicken, or a bushel of apples, something you knitted or something you baked. How the hell did the system evolve from that to this?
The only thing I can come up with is this: As technology has evolved, and medical knowledge has improved, costs increased. In Laura Ingalls' day, it didn't matter if you couldn't afford intricate surgeries or expensive therapies because those things didn't even exist! So as costs increased, somebody thought up the idea of issuing "health insurance" to help cover the costs. People already had fire insurance, even back to the 1700s, so the idea was already out there. A few people got this new-fangled insurance, most didn't. Then more chose to get it, then more, and costs continued to go up. And as doctors raised their prices, charging more for the same service (whether warranted or not), the suits at the insurance companies did NOT raise the amount they'd pay for that same service. But the doctors took it anyway, figuring they'd still make out ok with that lesser amount AND that the people who weren't insured would be paying the higher rate anyway.
The premiums for insurance kept going up as well, even though the amounts they'd pay for your care stayed flat. Premiums reached a point that many people couldn't even fully pay for them, so employers began to "subsidize" the coverage for their workers. Then that got to be too expensive for the companies, especially small ones, so some began to drop their workers' coverage or require workers to pay 100% of premiums. Yet somehow it's reached a point that everyone is expected to....nay, required to have insurance. How did this happen? Costs just keep going up and up and up, so doctors figure that NO ONE could pay the full amount on their own...therefore, insurance is a must if they ever plan to get paid.
Here are some radical thoughts I've had: (bear with me, they might seem insane)
How much more money to spend on my family's health care would I have if we didn't pay for insurance premiums every month? Couldn't I use that $4,000-$5,000 per year to pay for routine care, and even a good bit of care beyond just checkups? Could the whole insurance thing just be scrapped altogether, or at least made much more optional than it now appears to be?
If doctors are ok with accepting insurance payments that are FAR below the billed amount that they charge for a service, couldn't they just charge that lesser amount to start with? If they can cover their costs with the $77 for my dermatology visit, why are they charging nearly 3 times that? When people complain so much about the "high cost of health care" and the fact that many do not seek the care they need because of cost, it has to make you wonder WHY the costs are so high? If the $77 rate is good enough for Blue Cross to pay, it should be good enough for me to pay too.
Well, I haven't created world peace or solved the pressing problems of our time. All that I've done is show how little I know about the topic of our health care system and its need for reform. But it does need reform, that's clear. Preventative and routine care is important, and everyone should be able to receive that, the way I see it. Even without insurance. If costs were more reasonable, it would put this kind of care within reach of a lot more people. I just wish, though, that the people "in the know" who are actually going to create, debate, and vote on any reform plans would come to this daunting task with an open mind, open heart, and caring spirit. A life is not worth less or less in need of saving just because that person is poor.....now, what can we do to make sure appropriate care is available to all, not just some?
And the Rush Limbaugh/Glenn Beck/Bill O'Reillys of the world......SHUT UP! Quit spreading your crap about things that the health care proposals in Washington do NOT include! The bill does not require elderly people to make a plan with a government nurse about when and how they want to die. Please. :( Nor does it plan to "ration" care for anyone, or pay for care for illegal immigrants, or for abortions. So just stop the scare tactics, and try to actually use your brain and THINK about the topic at hand rather than spouting off ridiculous claims that just polarize the country even further.
So how was that? Too much of a heavy-duty topic for a Friday night? ;)
Wednesday, July 29, 2009
I've got nothing
Nothing witty, nothing funny, nothing exciting or profound to share. Been hoping I'd come up with something, and have been postponing doing a new blog entry so that I could wait until inspiration hit, but it hasn't. ;) I guess I'll just ramble, ponder and write in a stream-of-consciousness style. It's midnight as I write this, so it should be really interesting, LOL!
Summer's at an end around here--and no, I don't mean summer as measured by the heat index. That's still roaring along in the 90s every day. What I mean is that the most dreaded 2 words of the entire school year for band directors have arrived..........BAND CAMP. I think the whole experience should qualify under "cruel and unusual punishment", and I've been involved in it for plenty of years, so you know I can say that. K is there every day now, 8 am-5:30 pm. Next week, 8-8. I'm going over in the afternoons to run a sectional and remind myself that I was once a trumpet player and once a teacher as well. We're having to ship the kids off to a babysitter for 2 hours every day, but it looks as if they're having fun and at least it gives them a change of scenery and me a little Mom break too.
Found out a few days ago that one of Mr. L's teachers for this year has changed grade levels, so he's getting someone new to the school. I hate the unknown (as it relates to Mr. L) and am really really REALLY hoping this new teacher is a good one. He'll actually have 3 teachers this year, which means 3 for me to keep up with, 3 to educate in the ways of Asperger's and Mr. L in particular, 3 personalities, 3 styles of teaching, etc. {sigh} Seems like all I'm hearing these days is "3rd grade is SUCH a step up from 2nd, so different, so much harder". Great, I can't wait. Academically, I know without a doubt that he can handle it. Emotionally/socially/organizationally? Ehhh.....not so much, I'm afraid. In a lot of ways, he's still so immature, NONworldly, etc. And that's good to some extent, I guess, but if we want him to have any hope socially we've got to start promoting age-appropriate language and actions. WTF am I talking about? Well how about this........most 8 year olds aren't going to call it a "boo boo" when you scrape your knee, cut your finger, etc.
I just ordered what looks to be a great new book from Amazon the other day, The Hidden Curriculum. Can't wait to read it, memorize it, plaster its rules to my forehead or tattoo them on my arms or something. I posted a week ago on Hopeful Parents and went on and on about needing to create lists for Mr. L so that he can know what is and is NOT ok to say to various kinds of people. Someone suggested this book in her comment to my post, and I'm very grateful. Looks like it was actually written just for us! :) I'll review the book once I've devoured it. Give me a day or so, ok? :)
Summer's at an end around here--and no, I don't mean summer as measured by the heat index. That's still roaring along in the 90s every day. What I mean is that the most dreaded 2 words of the entire school year for band directors have arrived..........BAND CAMP. I think the whole experience should qualify under "cruel and unusual punishment", and I've been involved in it for plenty of years, so you know I can say that. K is there every day now, 8 am-5:30 pm. Next week, 8-8. I'm going over in the afternoons to run a sectional and remind myself that I was once a trumpet player and once a teacher as well. We're having to ship the kids off to a babysitter for 2 hours every day, but it looks as if they're having fun and at least it gives them a change of scenery and me a little Mom break too.
Found out a few days ago that one of Mr. L's teachers for this year has changed grade levels, so he's getting someone new to the school. I hate the unknown (as it relates to Mr. L) and am really really REALLY hoping this new teacher is a good one. He'll actually have 3 teachers this year, which means 3 for me to keep up with, 3 to educate in the ways of Asperger's and Mr. L in particular, 3 personalities, 3 styles of teaching, etc. {sigh} Seems like all I'm hearing these days is "3rd grade is SUCH a step up from 2nd, so different, so much harder". Great, I can't wait. Academically, I know without a doubt that he can handle it. Emotionally/socially/organizationally? Ehhh.....not so much, I'm afraid. In a lot of ways, he's still so immature, NONworldly, etc. And that's good to some extent, I guess, but if we want him to have any hope socially we've got to start promoting age-appropriate language and actions. WTF am I talking about? Well how about this........most 8 year olds aren't going to call it a "boo boo" when you scrape your knee, cut your finger, etc.
I just ordered what looks to be a great new book from Amazon the other day, The Hidden Curriculum. Can't wait to read it, memorize it, plaster its rules to my forehead or tattoo them on my arms or something. I posted a week ago on Hopeful Parents and went on and on about needing to create lists for Mr. L so that he can know what is and is NOT ok to say to various kinds of people. Someone suggested this book in her comment to my post, and I'm very grateful. Looks like it was actually written just for us! :) I'll review the book once I've devoured it. Give me a day or so, ok? :)
Tuesday, July 21, 2009
Tuesday Tidbits
I'm just full of these cute names for my blog posts, huh? ;)
~ Well, it's the last full week of life as we know it, LOL.......meaning, the last week before K starts the dreaded BAND CAMP and we essentially don't see him for the next 3 months. Every year that goes by makes me hate marching season more and more. When I get done with my own schooling, and am actually earning a salary again for a change, I swear we will make it happen for K to get out of doing marching stuff ever again. He can "refuse" that part of his contract; it means less money, fewer contracted days, but it will be well worth it. No more Friday nights wasted at meaningless football games, no more 6 am-11 pm Saturday contest trips, no more 3 or 4 nights a week at practice and getting home just at bedtime. :(
~ Hoping to have a yard sale this weekend, something we've needed to do for about 5 years, LOL. There are things that we've had in our garage, unpacked/unused, ever since moving to this house. There are furniture items we don't use anymore, baby stuff and clothes, and countless other things that make our garage look like a tornado hit it! Pray for no rain!
~ so fortunate that this area has so many water parks, because the kids love them and are really becoming good swimmers, especially Mr. L. We went to Splash Zone today and had a ball! Mr. L is swimming underwater like a champ; I'm so proud of him! A little daredevil-ish too....he took K with him on the BIG water slide over and over and over, while Energizer and I hung out in the regular pool area.
And tonight, at bedtime, he gave me one of those rare peeks into what he's thinking, how his mind works, etc. He was telling me that something had happened at the start of one of their slides down today.....it's a two-person "tube", and he was in front. Thought K was seated and ready too, but he wasn't. So Mr. L pushed off and started to slide, and says K had to really jump to get in before the float was gone! Then, a few minutes later, he was almost in tears, saying "I just can't stop thinking about Dad and how far he had to jump to get on the slide with me, and how much he could have gotten hurt if he had missed getting on". He really did start to cry, then insisted he had to get up and go to the bathroom to "wipe away my tears". He has got to be the most sensitive kid, with the biggest heart, of anyone I've ever seen. :) :)
~ Energizer fell asleep in my arms as we sat in the recliner tonight. I reminded him, as his eyes drooped, of how he used to do that every night when he was a baby. I'd give him a bottle, rock him, and then take him to his room after he was asleep (and after I'd gotten my fix of snuggle time with him). No, not the textbook bedtime routine, and probably frowned on by most people, but I wouldn't trade those times for the world. He was soooo wiped out by today's "water park adventures" (his words), so he just snuggled up in my lap with a throw blanket and some stuffed animals and let me rock him. The last thing he said was "I love you", followed by a sweet, sloppy kiss. I asked him earlier today if he'd always let me snuggle with him, even when he got older and bigger.....he said, "yes, sometimes I will". Please Lord, let there be some of those times! I can't bear the thought of not having those special moments. :)
~ Well, it's the last full week of life as we know it, LOL.......meaning, the last week before K starts the dreaded BAND CAMP and we essentially don't see him for the next 3 months. Every year that goes by makes me hate marching season more and more. When I get done with my own schooling, and am actually earning a salary again for a change, I swear we will make it happen for K to get out of doing marching stuff ever again. He can "refuse" that part of his contract; it means less money, fewer contracted days, but it will be well worth it. No more Friday nights wasted at meaningless football games, no more 6 am-11 pm Saturday contest trips, no more 3 or 4 nights a week at practice and getting home just at bedtime. :(
~ Hoping to have a yard sale this weekend, something we've needed to do for about 5 years, LOL. There are things that we've had in our garage, unpacked/unused, ever since moving to this house. There are furniture items we don't use anymore, baby stuff and clothes, and countless other things that make our garage look like a tornado hit it! Pray for no rain!
~ so fortunate that this area has so many water parks, because the kids love them and are really becoming good swimmers, especially Mr. L. We went to Splash Zone today and had a ball! Mr. L is swimming underwater like a champ; I'm so proud of him! A little daredevil-ish too....he took K with him on the BIG water slide over and over and over, while Energizer and I hung out in the regular pool area.
And tonight, at bedtime, he gave me one of those rare peeks into what he's thinking, how his mind works, etc. He was telling me that something had happened at the start of one of their slides down today.....it's a two-person "tube", and he was in front. Thought K was seated and ready too, but he wasn't. So Mr. L pushed off and started to slide, and says K had to really jump to get in before the float was gone! Then, a few minutes later, he was almost in tears, saying "I just can't stop thinking about Dad and how far he had to jump to get on the slide with me, and how much he could have gotten hurt if he had missed getting on". He really did start to cry, then insisted he had to get up and go to the bathroom to "wipe away my tears". He has got to be the most sensitive kid, with the biggest heart, of anyone I've ever seen. :) :)
~ Energizer fell asleep in my arms as we sat in the recliner tonight. I reminded him, as his eyes drooped, of how he used to do that every night when he was a baby. I'd give him a bottle, rock him, and then take him to his room after he was asleep (and after I'd gotten my fix of snuggle time with him). No, not the textbook bedtime routine, and probably frowned on by most people, but I wouldn't trade those times for the world. He was soooo wiped out by today's "water park adventures" (his words), so he just snuggled up in my lap with a throw blanket and some stuffed animals and let me rock him. The last thing he said was "I love you", followed by a sweet, sloppy kiss. I asked him earlier today if he'd always let me snuggle with him, even when he got older and bigger.....he said, "yes, sometimes I will". Please Lord, let there be some of those times! I can't bear the thought of not having those special moments. :)
Wednesday, July 15, 2009
"if I could turn back time...."
....is a line from a cheesy old Cher song, one which you'll now have stuck in your head for the next day or so. You're welcome. ;)
But if I could somehow do what Cher speaks of, I'd go back to the Fall of 2003, and speak to my "newly pregnant for the second time" self. And if I could resist the urge to wring my own neck out of frustration, I'd want to talk to myself in some very forceful language. VERY forceful. What would I say? Something like:
"Don't fall for that stuff! You know, the only-in-a-first-pregnancy crap! Do your research, don't be complacent. Get second opinions, third opinions, 7,964th opinions. Assume the worst, and prepare for it. Drive your butt down to the medical university on the day you get the positive pregnancy test.....and tell them you're not leaving until they hook you up with a peri or maternal/fetal medicine doc."
Or, better yet, go back in time even further, maybe 2002 or so, and say:
"Get the underlying disorders tests run! You don't know what the hell that means? Look it up, talk to people, learn everything you can. There ARE things that can be done for some women to keep it from happening again, so don't let them tell you otherwise. Be strong, insist on knowing and doing everything humanly possible to make the next pregnancy healthy."
So why am I obsessing about this now? Well, truth be told, it's not just now. It's pretty much been a constant (albeit in the background sometimes) ever since my pregnancy with Energizer. More specifically, since his birth, and since I became a part of the online community of preeclampsia survivors. I've learned so much about the disease itself from my dear cyber-friends, and learned so much about what I could have done, should have done if I'd only known.....and things might have been so very different.
I'm so angry at myself when I look back. I remember telling people early on in the pregnancy "oh, well it usually only happens in first pregnancies, and they're gonna watch me closely" etc. {{{sigh}}} Lot of freakin good that did, huh? I was so blissfully ignorant, so naive, so willing to just accept whatever I was told, and I can't believe I was so stupid. :(
I'm not going to try again, I'm really not. Really. I mean it. Cross my heart and hope to die.....ooops, bad choice of words, considering that another pregnancy might actually cause that phrase to become all-too-true. But among the PE survivor friends I have, I'm one of the "old ladies", and there are still plenty of them who are young enough to try again AND equipped with the knowledge and resources that I didn't have in either of my pregnancies. So there's a mini-baby-boom going on right now in my online community, which is wonderful and exciting, of course. But....
****embarrassing, selfish and ridiculous content follows*******
I can't help feeling inadequate, like a failure all over again, whenever one of those ladies makes it through a full-term healthy pregnancy after PE. Some of them have no trouble at all and the pregnancy is basically smooth and easy. Others, knowing what they do now about their health condition, etc, work very hard to enable a long, healthy pregnancy. They take supplements, injections, spend long weeks on bedrest, etc, and they manage to reach that elusive goal that I never did--full term delivery, no NICU, healthy baby and Mom.
Pathetic, huh? No one has ever accused me of doing anything wrong in my pregnancies, nor would they. The good health and success of my friends' pregnancies does not somehow reflect badly on me or make anyone think less of me. I'm just doing it to myself, it's my problem, I know that. Truth is, the emotional wound of my experiences is still very raw, and seeing my friends "beat PE" brings out the hurt in me again even while I celebrate their healthy babies. There's a thin layer of healing skin over the wound, so that when you look at it from the outside you might not even know what lies underneath.
What's underneath is a hole, deep in the emotional storehouse of experiences that bind women together as mothers. When a woman is pregnant, talk among the other women naturally turns to their labor/delivery stories. Nope, I got nothing. Women proudly photograph their blossoming bellies and share with everyone they know that visible, tangible evidence of the new life growing inside them. The pics get attached to emails, posted on websites, plastered all over Facebook, and framed on the wall for posterity. But you've got to have a big belly in order to photograph it.....so again, I got nothing.
And nothing I can do now, or could ever do, will change any of that, or fill the gaping hole with those missing memories and experiences that I never enjoyed. People that I dearly love and have known for years in cyberspace may someday be blessed with the chance to have those experiences, and I wish them only the best. Bravo to them for being their own best advocates, doing the research, getting the tests done and conquering the horrible scourge of preeclampsia. But allow me the indulgence of wishing, wondering, "if I could turn back time".....
But if I could somehow do what Cher speaks of, I'd go back to the Fall of 2003, and speak to my "newly pregnant for the second time" self. And if I could resist the urge to wring my own neck out of frustration, I'd want to talk to myself in some very forceful language. VERY forceful. What would I say? Something like:
"Don't fall for that stuff! You know, the only-in-a-first-pregnancy crap! Do your research, don't be complacent. Get second opinions, third opinions, 7,964th opinions. Assume the worst, and prepare for it. Drive your butt down to the medical university on the day you get the positive pregnancy test.....and tell them you're not leaving until they hook you up with a peri or maternal/fetal medicine doc."
Or, better yet, go back in time even further, maybe 2002 or so, and say:
"Get the underlying disorders tests run! You don't know what the hell that means? Look it up, talk to people, learn everything you can. There ARE things that can be done for some women to keep it from happening again, so don't let them tell you otherwise. Be strong, insist on knowing and doing everything humanly possible to make the next pregnancy healthy."
So why am I obsessing about this now? Well, truth be told, it's not just now. It's pretty much been a constant (albeit in the background sometimes) ever since my pregnancy with Energizer. More specifically, since his birth, and since I became a part of the online community of preeclampsia survivors. I've learned so much about the disease itself from my dear cyber-friends, and learned so much about what I could have done, should have done if I'd only known.....and things might have been so very different.
I'm so angry at myself when I look back. I remember telling people early on in the pregnancy "oh, well it usually only happens in first pregnancies, and they're gonna watch me closely" etc. {{{sigh}}} Lot of freakin good that did, huh? I was so blissfully ignorant, so naive, so willing to just accept whatever I was told, and I can't believe I was so stupid. :(
I'm not going to try again, I'm really not. Really. I mean it. Cross my heart and hope to die.....ooops, bad choice of words, considering that another pregnancy might actually cause that phrase to become all-too-true. But among the PE survivor friends I have, I'm one of the "old ladies", and there are still plenty of them who are young enough to try again AND equipped with the knowledge and resources that I didn't have in either of my pregnancies. So there's a mini-baby-boom going on right now in my online community, which is wonderful and exciting, of course. But....
****embarrassing, selfish and ridiculous content follows*******
I can't help feeling inadequate, like a failure all over again, whenever one of those ladies makes it through a full-term healthy pregnancy after PE. Some of them have no trouble at all and the pregnancy is basically smooth and easy. Others, knowing what they do now about their health condition, etc, work very hard to enable a long, healthy pregnancy. They take supplements, injections, spend long weeks on bedrest, etc, and they manage to reach that elusive goal that I never did--full term delivery, no NICU, healthy baby and Mom.
Pathetic, huh? No one has ever accused me of doing anything wrong in my pregnancies, nor would they. The good health and success of my friends' pregnancies does not somehow reflect badly on me or make anyone think less of me. I'm just doing it to myself, it's my problem, I know that. Truth is, the emotional wound of my experiences is still very raw, and seeing my friends "beat PE" brings out the hurt in me again even while I celebrate their healthy babies. There's a thin layer of healing skin over the wound, so that when you look at it from the outside you might not even know what lies underneath.
What's underneath is a hole, deep in the emotional storehouse of experiences that bind women together as mothers. When a woman is pregnant, talk among the other women naturally turns to their labor/delivery stories. Nope, I got nothing. Women proudly photograph their blossoming bellies and share with everyone they know that visible, tangible evidence of the new life growing inside them. The pics get attached to emails, posted on websites, plastered all over Facebook, and framed on the wall for posterity. But you've got to have a big belly in order to photograph it.....so again, I got nothing.
And nothing I can do now, or could ever do, will change any of that, or fill the gaping hole with those missing memories and experiences that I never enjoyed. People that I dearly love and have known for years in cyberspace may someday be blessed with the chance to have those experiences, and I wish them only the best. Bravo to them for being their own best advocates, doing the research, getting the tests done and conquering the horrible scourge of preeclampsia. But allow me the indulgence of wishing, wondering, "if I could turn back time".....
Monday, July 13, 2009
bumming, not sure why
It's not Friday, but I feel like I need another Friday Fragments post........just random tidbits of crap that are going on in my life that I want to write about. Nothing profound and life-changing today, I'm afraid. (as if it ever is, LOL!) Maybe we could call it "Monday Morsels". ;)
**The last two nights I have had dreams that I decided to return to my previous (and truly soul-crushing) job, rather than go back to college for Music Therapy as I'm actually doing. WTF? I don't usually put much stock into the interpretation of dreams, but I can't figure out for the life of me why I'm dreaming this stuff.
**Had a party at the house on Saturday night, and am still mildly pissed off about the sparse attendance. Mostly upset at the local friends who never really responded to the invitation other than a "not sure, we'll let you know" etc. I'm sorry.......I thought we were all adults here, and understood what manners were. Don't give me the "I'm so busy, the kids, etc" excuse. I've got 2 kids too, and I'll bet you the minimum salary for a major league baseball player ($400 K in case you wondered) that raising MY little guys is just a tad tougher than the healthy, brilliant and oh-so-NT kids you were blessed with. But I am also sure that when you invite us to something, we're there. Grrrrr......
**Took Mr. L to social skills group today, and it occurred in the therapy practice's brand-new clinic space, which is INCREDIBLE! So nice and roomy, colorful, modern, welcoming, etc and the therapists seemed really proud to show it to us. :) This is a nice thing, considering we'll be visiting this clinic 2x weekly until the end of time, unless something drastic changes.
**Feeling frustrated about weight again. Haven't actually weighed myself even since we got back from the Disney trip, but I know I've been "emotional eating" more than I'd like and I can feel the pounds coming back on. Those 6-7 lbs. I fought so hard to lose over the last couple of months of school? They're baaaackkkkk. Or at least I think they are. {{sigh}} I did try running yesterday though, and kind of liked it (is that weird?). No one else in my family either wants to do it or even can do it (K has knee issues), and I don't relish the thought of saying "bye, see you guys later, going for a run". All 3 of them will be playing a game, watching something on TV, etc and I'll be out there sweating......not sure that's going to happen very often. Maybe after school starts. But see, that's my problem. With me, there's always an excuse, always a reason to procrastinate. :(
So anyway, I've gotta get out of this funk. I know it's a funk because just thinking about tomorrow and what we might do makes me tired (keep in mind, all 4 of us are on summer vacation for a couple more weeks, setting our own schedules or LACK of any schedule, etc). I end up thinking "oh, I don't feel like doing that, maybe we could just stay home" even if doing that means going to the movies or shopping. And I'm snapping at the kids way more than I should, more than I typically do, but then I hate myself for the way I sound. :(
Guess this should have been called "Melancholy Monday Morsels"............
**The last two nights I have had dreams that I decided to return to my previous (and truly soul-crushing) job, rather than go back to college for Music Therapy as I'm actually doing. WTF? I don't usually put much stock into the interpretation of dreams, but I can't figure out for the life of me why I'm dreaming this stuff.
**Had a party at the house on Saturday night, and am still mildly pissed off about the sparse attendance. Mostly upset at the local friends who never really responded to the invitation other than a "not sure, we'll let you know" etc. I'm sorry.......I thought we were all adults here, and understood what manners were. Don't give me the "I'm so busy, the kids, etc" excuse. I've got 2 kids too, and I'll bet you the minimum salary for a major league baseball player ($400 K in case you wondered) that raising MY little guys is just a tad tougher than the healthy, brilliant and oh-so-NT kids you were blessed with. But I am also sure that when you invite us to something, we're there. Grrrrr......
**Took Mr. L to social skills group today, and it occurred in the therapy practice's brand-new clinic space, which is INCREDIBLE! So nice and roomy, colorful, modern, welcoming, etc and the therapists seemed really proud to show it to us. :) This is a nice thing, considering we'll be visiting this clinic 2x weekly until the end of time, unless something drastic changes.
**Feeling frustrated about weight again. Haven't actually weighed myself even since we got back from the Disney trip, but I know I've been "emotional eating" more than I'd like and I can feel the pounds coming back on. Those 6-7 lbs. I fought so hard to lose over the last couple of months of school? They're baaaackkkkk. Or at least I think they are. {{sigh}} I did try running yesterday though, and kind of liked it (is that weird?). No one else in my family either wants to do it or even can do it (K has knee issues), and I don't relish the thought of saying "bye, see you guys later, going for a run". All 3 of them will be playing a game, watching something on TV, etc and I'll be out there sweating......not sure that's going to happen very often. Maybe after school starts. But see, that's my problem. With me, there's always an excuse, always a reason to procrastinate. :(
So anyway, I've gotta get out of this funk. I know it's a funk because just thinking about tomorrow and what we might do makes me tired (keep in mind, all 4 of us are on summer vacation for a couple more weeks, setting our own schedules or LACK of any schedule, etc). I end up thinking "oh, I don't feel like doing that, maybe we could just stay home" even if doing that means going to the movies or shopping. And I'm snapping at the kids way more than I should, more than I typically do, but then I hate myself for the way I sound. :(
Guess this should have been called "Melancholy Monday Morsels"............
Friday, July 10, 2009
Friday Fragments
Ok, I'm trying something new......thanks to Jen for the idea of Friday Fragments!
Friday Fragments, the Water Park Edition
~ Took the family to a local water park today, and they loved it. I did too. What I hate is how it seems as if NO ONE monitors their kids in public places anymore, except me and K, that is. :(
~ On our way to the water park, we drove by the kiddos' school to look at teacher assignments posted on the door today. WOO HOO, Energizer got the teacher I asked for, the teacher he absolutely MUST have for success in Kindergarten. *sigh of relief* Mr. L will have 3 third grade teachers (all kids rotate between them), so it really doesn't matter who he is assigned to for "homeroom".
~ A sweet but heartbreaking scene I observed at the water park: A dad, gray hair, probably late 40s or older, with his son, approximately age 11. Holding hands, walking all around the spraying fountains together, etc. Something made me look closer, and I noticed the son putting his other hand over his ear and cringing as they walked under a waterfall. I watched for a few more seconds, and saw that the boy's swim trunks were loose and drooping a bit, exposing a pair of what we called "swimmies" underneath......you know, the colorful swim diaper things that babies and toddlers often wear in the pool. So, I made my educated guess/assumption that this is a child on the autism spectrum. Could be wrong, I suppose, but I'm pretty sure. Anyway, I kept sneaking glances at them, watching how carefully the dad walked the child through all kinds of water "obstacles" .....under, over, through, etc. Water wasn't deep, maybe a foot at the most, and Dad and son explored it all. Watching them just really touched me, how good the Dad seemed to be with him, etc, and then there's always that "but for the grace of God" thought too if you know what I mean........
~ A week ago, I had a moment of temporary insanity and invited some friends over for a party to be held at my house on Saturday night, July 11. WTF was I thinking? Yes I know, these families have almost all had gatherings at their homes (which we've attended), and now we ought to return the favor and have something here, but OMG the amount of cleaning and crap I've had to do in this house to get ready. And there's still tons more, and only 20 hours to go until they get here! K keeps telling me it doesn't matter, they all know we have kids and our house won't look 100% perfect, but I just can't stand the thought of having people in here unless we're at least on 97% (*or better, of course).
~ Speaking of the party, got any good margarita recipes? I decided to make an interesting flavor or two, beyond just the standard kind, and am still looking for ideas. Comment away if you've got anything!
Friday Fragments, the Water Park Edition
~ Took the family to a local water park today, and they loved it. I did too. What I hate is how it seems as if NO ONE monitors their kids in public places anymore, except me and K, that is. :(
~ On our way to the water park, we drove by the kiddos' school to look at teacher assignments posted on the door today. WOO HOO, Energizer got the teacher I asked for, the teacher he absolutely MUST have for success in Kindergarten. *sigh of relief* Mr. L will have 3 third grade teachers (all kids rotate between them), so it really doesn't matter who he is assigned to for "homeroom".
~ A sweet but heartbreaking scene I observed at the water park: A dad, gray hair, probably late 40s or older, with his son, approximately age 11. Holding hands, walking all around the spraying fountains together, etc. Something made me look closer, and I noticed the son putting his other hand over his ear and cringing as they walked under a waterfall. I watched for a few more seconds, and saw that the boy's swim trunks were loose and drooping a bit, exposing a pair of what we called "swimmies" underneath......you know, the colorful swim diaper things that babies and toddlers often wear in the pool. So, I made my educated guess/assumption that this is a child on the autism spectrum. Could be wrong, I suppose, but I'm pretty sure. Anyway, I kept sneaking glances at them, watching how carefully the dad walked the child through all kinds of water "obstacles" .....under, over, through, etc. Water wasn't deep, maybe a foot at the most, and Dad and son explored it all. Watching them just really touched me, how good the Dad seemed to be with him, etc, and then there's always that "but for the grace of God" thought too if you know what I mean........
~ A week ago, I had a moment of temporary insanity and invited some friends over for a party to be held at my house on Saturday night, July 11. WTF was I thinking? Yes I know, these families have almost all had gatherings at their homes (which we've attended), and now we ought to return the favor and have something here, but OMG the amount of cleaning and crap I've had to do in this house to get ready. And there's still tons more, and only 20 hours to go until they get here! K keeps telling me it doesn't matter, they all know we have kids and our house won't look 100% perfect, but I just can't stand the thought of having people in here unless we're at least on 97% (*or better, of course).
~ Speaking of the party, got any good margarita recipes? I decided to make an interesting flavor or two, beyond just the standard kind, and am still looking for ideas. Comment away if you've got anything!
Sunday, July 5, 2009
doubting, again
Crappy day with little Energizer today. *sigh* I'm just exhausted from all that we've dealt with from him today, and when days like this come, I start doubting again.....worrying about the future, doubting our decision about medication, wondering how in the hell he's going to make it in "real school" this fall, much less in "real life" for the next 75 years or so. *even bigger sigh*
We started trying meds early last fall, September or October, I think. The first one we tried, Tenex, did nothing for him but make him very VERY sleepy. He was in a gymnastics class and falling asleep while listening to instructions from the teacher. :( Oh, but the impulsiveness, aggression, violence, "wildness"? Still there just as much, or even more it seemed. In November, after he was unceremoniously kicked out of our preschool, I called the ped in desperation and she started us on Focalin. He's tried the 2.5 mg short-acting tablets, and the 5 mg XR capsules.
The thing is, Focalin REALLY works for him. Makes him a tiny bit sleepy at times, but other than that, all we get is good stuff......listening, sitting still when asked to, sweet disposition, no aggression, basically an angel. So what we've got in our house is a Jekyll and Hyde now---without Focalin, holy terror; with Focalin, a joy to have around.
Today, we were half unpacked from our quick trip to visit family for the 4th, and I couldn't find the XR capsules when I needed to give him one this morning. We usually do XR in the morning, and then follow up with a short-acting tablet around 3 or 4 pm if needed to get us through the evening. But we were in a hurry for church, and I'm dashing around looking for the flipping pill bottle......not a pretty picture. Eventually, I gave him one of the tablets instead, figuring that was better than nothing, and it was, for a while.
We'd planned a grocery store outing for the afternoon, and as the hour approached we saw the 2.5 mg wearing off. How could we tell? The maniacal laughter, the near-constant running, seeming inability to stop and/or listen, and the number of times I have to resort to "ONE.........TWO....." etc. I mixed up another 2.5 mg tablet into lemonade (our preferred method of consumption) and he drank it as we walked to the car and got loaded up. The store is only 1/2 mile away, and clearly the med did NOT kick in as quickly as I hoped it would. Can you say "shopping trip from hell?" Good job, boys and girls, I knew you could!
Standing up constantly in the stupid freaking "car" contraption that he insists on riding in, grabbing anything he can touch on the store shelves, nonstop chatter about wanting a cookie, wanting ice cream, etc. Eventually, getting out of said "car" but insisting on pushing the car instead.......pushing it WAY too fast, pushing it into the back of people's legs and feet, and just generally acting like a monster who apparently was never granted the gift of hearing. Or of parents, I guess, which is probably what the other shoppers thought.
So, in one of my finer parenting moments, I made an ass of myself in front of the store staff by jerking his hands off of the cart handle just milliseconds before it would have crashed into our bagboy's feet. I jerked him away from the handle, picked him up and carried him, baby style, out into the store lobby while K paid for the food. And we had a "word of prayer" in my (hopefully) softest yet scariest Mom voice about how he'd better NEVER do this again, when we say stop pushing the cart then he'd better stop, etc. Still, no med effectiveness yet, I could tell by the laughing, the thrashing to get out of my arms, etc. And boy, was I regretting that we hadn't put a bottle of wine or some Smirnoff Ice in the cart.......
But you know what? By the time I strapped him into the carseat to drive home, it was kicking in. He was very repentant, almost in tears, and I could see the "angel child" emerging again. At home, things were by no means perfect, but we've certainly been through worse. In the occasional moments of calm tonight, I started thinking though (back to where I started this rambling post).........Is this the way it will always be? People ask me "will he have to take these meds all of his life?" and I don't know what to say. If today is any indication, yes he will.
But what are we actually teaching him? He doesn't know (yet) that he even takes meds, because I didn't want him to use that as an excuse, or expect that the meds have to do the hard work but not him. Does that even make sense? Am I just deluded and/or stupid? It just feels like we're putting a band-aid (or 2) every day on a wound that never heals, never improves. And God forbid if we run out of band-aids, or miss a day........it's a nightmare. But we just keep on sticking the band-aids over the spot, hoping no one will notice and that people won't realize that my child has a festering open wound on his body and wonder why I'm not actually DOING something to make it better.
This has made no sense, and I'm sorry for that, but still appreciate you letting me say it. I'm just worrying, I guess, thinking that we're masking the problem but not improving it, solving it.......only, can it be solved at all? Does age, maturity help? Are there strategies we don't know about? I don't want my child to be 100% dependent on medication to even function in his life, in his world. Is that what he has to look forward to? Right now, my sanity and survival depends on those meds, I'll tell you that much. Will that ever change? Am I taking the easy and/or selfish way out?
We started trying meds early last fall, September or October, I think. The first one we tried, Tenex, did nothing for him but make him very VERY sleepy. He was in a gymnastics class and falling asleep while listening to instructions from the teacher. :( Oh, but the impulsiveness, aggression, violence, "wildness"? Still there just as much, or even more it seemed. In November, after he was unceremoniously kicked out of our preschool, I called the ped in desperation and she started us on Focalin. He's tried the 2.5 mg short-acting tablets, and the 5 mg XR capsules.
The thing is, Focalin REALLY works for him. Makes him a tiny bit sleepy at times, but other than that, all we get is good stuff......listening, sitting still when asked to, sweet disposition, no aggression, basically an angel. So what we've got in our house is a Jekyll and Hyde now---without Focalin, holy terror; with Focalin, a joy to have around.
Today, we were half unpacked from our quick trip to visit family for the 4th, and I couldn't find the XR capsules when I needed to give him one this morning. We usually do XR in the morning, and then follow up with a short-acting tablet around 3 or 4 pm if needed to get us through the evening. But we were in a hurry for church, and I'm dashing around looking for the flipping pill bottle......not a pretty picture. Eventually, I gave him one of the tablets instead, figuring that was better than nothing, and it was, for a while.
We'd planned a grocery store outing for the afternoon, and as the hour approached we saw the 2.5 mg wearing off. How could we tell? The maniacal laughter, the near-constant running, seeming inability to stop and/or listen, and the number of times I have to resort to "ONE.........TWO....." etc. I mixed up another 2.5 mg tablet into lemonade (our preferred method of consumption) and he drank it as we walked to the car and got loaded up. The store is only 1/2 mile away, and clearly the med did NOT kick in as quickly as I hoped it would. Can you say "shopping trip from hell?" Good job, boys and girls, I knew you could!
Standing up constantly in the stupid freaking "car" contraption that he insists on riding in, grabbing anything he can touch on the store shelves, nonstop chatter about wanting a cookie, wanting ice cream, etc. Eventually, getting out of said "car" but insisting on pushing the car instead.......pushing it WAY too fast, pushing it into the back of people's legs and feet, and just generally acting like a monster who apparently was never granted the gift of hearing. Or of parents, I guess, which is probably what the other shoppers thought.
So, in one of my finer parenting moments, I made an ass of myself in front of the store staff by jerking his hands off of the cart handle just milliseconds before it would have crashed into our bagboy's feet. I jerked him away from the handle, picked him up and carried him, baby style, out into the store lobby while K paid for the food. And we had a "word of prayer" in my (hopefully) softest yet scariest Mom voice about how he'd better NEVER do this again, when we say stop pushing the cart then he'd better stop, etc. Still, no med effectiveness yet, I could tell by the laughing, the thrashing to get out of my arms, etc. And boy, was I regretting that we hadn't put a bottle of wine or some Smirnoff Ice in the cart.......
But you know what? By the time I strapped him into the carseat to drive home, it was kicking in. He was very repentant, almost in tears, and I could see the "angel child" emerging again. At home, things were by no means perfect, but we've certainly been through worse. In the occasional moments of calm tonight, I started thinking though (back to where I started this rambling post).........Is this the way it will always be? People ask me "will he have to take these meds all of his life?" and I don't know what to say. If today is any indication, yes he will.
But what are we actually teaching him? He doesn't know (yet) that he even takes meds, because I didn't want him to use that as an excuse, or expect that the meds have to do the hard work but not him. Does that even make sense? Am I just deluded and/or stupid? It just feels like we're putting a band-aid (or 2) every day on a wound that never heals, never improves. And God forbid if we run out of band-aids, or miss a day........it's a nightmare. But we just keep on sticking the band-aids over the spot, hoping no one will notice and that people won't realize that my child has a festering open wound on his body and wonder why I'm not actually DOING something to make it better.
This has made no sense, and I'm sorry for that, but still appreciate you letting me say it. I'm just worrying, I guess, thinking that we're masking the problem but not improving it, solving it.......only, can it be solved at all? Does age, maturity help? Are there strategies we don't know about? I don't want my child to be 100% dependent on medication to even function in his life, in his world. Is that what he has to look forward to? Right now, my sanity and survival depends on those meds, I'll tell you that much. Will that ever change? Am I taking the easy and/or selfish way out?
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