This week was the first week of classes for the spring semester. I have two hybrid classes that meet Saturdays and online, and one class that meets entirely online. I will spend a total of 5 days on campus this semester, but those will be long (9a-4p) days of intense informational overloading. I will spend, on average, 20-35 hours per week on my computer working on school assignments or reading online information. That's in addition to about 10 hours a week of reading textbooks. Just in case you didn't think being a grad student was a full-time gig, heh. All of that's in addition to 15 hrs/wk of work for my job, and the countless, 'round-the-clock hours spent being a full-time Mom.
Yeah, I'm a busy gal when school's in full swing!
I was originally enrolled to begin classes the summer of 2010, but then I joined up with a local band and realized that one of the gigs on the band calendar directly conflicted with one of my mandatory Saturday classes, and I chose at the time to be in a band rather than be a student.
They say hindsight is 20-20, and now, looking back, I certainly wish I had chosen school over the band. I'd be finishing up this semester or next instead of just now getting to the meat of my Master's program. I'd have spared myself a lot of emotional pain and trauma if I'd gone the student route instead of the rock star route... But, then again, I'd have missed out on a lot of fun times and life-altering experiences. There's nothing quite like pouring your heart out to a roomful of strangers through song or having your name up on a casino marquis as the weekend's main attraction. If I had gone to school when I originally planned instead of trying my hand at the band business, I'd have never known what I was missing. I might have spent the rest of my life wondering... Now, I can say with certainty that I gave it a shot, and it wasn't for me.
Some people are suited for a life on the road, living paycheck to paycheck, feeding on the applause from the crowd and the free meal vouchers given as payment, but I'm much happier being rooted down, spending time with my family, and having a predictable day-to-day routine. I like that I wake up at the same time every day to put C on the bus, then I have each morning's routine, then I greet her bus again at noon. I like having due dates for school assignments, books to read on a predetermined schedule, and regular work to churn out for a paycheck. I LOVE sleeping in my own bed every night instead of shuffling from one hotel room to the next. One important thing to note, however, is that I didn't fully appreciate all of these things until I spent just over a year living an entirely different sort of life. I had to try out both to know without a doubt where I belong. I'm glad I can be so certain now.
This post is titled Perspective, but it's not just about perspective on my career path or the last year and a half. It's also about the perspective I'm given from my classes.
I'm studying to be an Early Childhood Special Educator. That means I'm being educated and trained on any number of disabilities and high-risk situations faced by children from birth through 8 years old. I'm also being educated on how children in this age range typically develop, when not affected by high-risk situations or disabilities. It's all very eye-opening, particularly in regards to my own life.
Having a child with disabilities and complex medical situations can be a real downer sometimes. It's easy to focus on how each day is more challenging or more expensive than it would have been if your child had been lucky enough to be born "typical." It's also easy to trick yourself into thinking you know all there is to know about life with disabilities.
One of the most important things I have learned from my graduate coursework is that I only know one tiny perspective. I know MY situation, but my situation differs greatly from that of every other parent out there, whether their child has any disabilities or medical challenges or not. I will never know what it's like to be the parent of a child with autism, no matter how much I study to better understand it. I will never know what it's like to be the parent of a toddler who is typically developing and going through the "terrible twos," because that wasn't my reality. I will never know what it's like to have a child with a life-threatening condition and live in constant fear that each moment could be the last. (Of course, I say I'll never know these things, but I plan on having one or two more children in the next few years, so maybe I'll get a glimpse into one of those other lives... You never know what life will bring!) I never thought I had all the answers to parenting or to parenting a child with special needs, but my classes are a constant reminder that I really don't even come close to knowing it all. They're a constant reminder that things could have been a lot better, they could have been a lot worse, or they could have just been completely different. My experiences, my challenges, my joys, and my overall perspectives... They're so tiny and isolated and unique. They are mine and mine alone, and they can't be compared to those of anyone else. It's so easy to close your mind to all the other lives around you, all the other ideas and perspectives... But I am fortunate to have regular and eye-opening reminders that my perspective is only one of millions. It's nice to be kept in check, forced to keep an open mind, and constantly challenged to try and see the world through another's eyes.
It's awfully nice to have perspective.
Sunday, January 29, 2012
Friday, January 27, 2012
People Love Drama
There's this person I knew, and he did a bad thing. He got in trouble for it, and he faces jail time for it, and that should be the end of it.
But it isn't.
There was a mention of it in the paper. Brief, but to the point. Suddenly, it was public news. Now, given the nature of the bad thing, I'm not at all surprised that it was considered newsworthy, as arrests for much more mundane things are posted as newsworthy material. But THAT should have been the end of it.
But it wasn't.
Upon discovering this particular news item, some unknown number of individuals took it upon themselves to spread the word of this bad thing and the ensuing arrest. They posted about it on this person's work-related facebook account, on craigslist, and I don't even know where else. They called him names. They ruined his reputation, and perhaps even his career.
To those people, even though they'll never see this post, I'd like to say: SHAME ON YOU. A person screwed up. A person has an illness. A person got in trouble. Let it be! Why add to their misery by attacking them on every possible front? I noticed that none of the public "dings" I saw were signed--what, you're man enough to call someone out for screwing up, but not man enough to stand behind the things you say about him?
Now, I have my own personal issues with the person who screwed up. I feel I have been wronged by him in the past, but, while I've wanted all traces of him removed from my life, I didn't want anything like this to happen to him. I didn't want his private matters to be made public, nor did I want to see his way of making a living threatened. His reputation was crucial for keeping him in work, and I don't know now if he's able to work at all. I don't know if anybody's standing by him as he struggles through his shame... And, no matter how much he may have hurt me in the past, I don't think anyone deserves to walk that path alone.
I had told myself that I had forgiven him for what he'd done to me, even while I'm still struggling in therapy to recover from it... But I guess I didn't know for sure whether I truly forgave him until I saw the remnants of what appears to have been a mighty internet blitz attack. If I didn't forgive him, I couldn't wish better for him than that. I couldn't hope the way I do that someone is by his side right now, helping him along. If I didn't forgive him, I'd be rejoicing in his public shame and suffering instead of hurting for him the way I do now.
What can I say? The public loves its drama... But I guess I don't. I really did wish better for him.
But it isn't.
There was a mention of it in the paper. Brief, but to the point. Suddenly, it was public news. Now, given the nature of the bad thing, I'm not at all surprised that it was considered newsworthy, as arrests for much more mundane things are posted as newsworthy material. But THAT should have been the end of it.
But it wasn't.
Upon discovering this particular news item, some unknown number of individuals took it upon themselves to spread the word of this bad thing and the ensuing arrest. They posted about it on this person's work-related facebook account, on craigslist, and I don't even know where else. They called him names. They ruined his reputation, and perhaps even his career.
To those people, even though they'll never see this post, I'd like to say: SHAME ON YOU. A person screwed up. A person has an illness. A person got in trouble. Let it be! Why add to their misery by attacking them on every possible front? I noticed that none of the public "dings" I saw were signed--what, you're man enough to call someone out for screwing up, but not man enough to stand behind the things you say about him?
Now, I have my own personal issues with the person who screwed up. I feel I have been wronged by him in the past, but, while I've wanted all traces of him removed from my life, I didn't want anything like this to happen to him. I didn't want his private matters to be made public, nor did I want to see his way of making a living threatened. His reputation was crucial for keeping him in work, and I don't know now if he's able to work at all. I don't know if anybody's standing by him as he struggles through his shame... And, no matter how much he may have hurt me in the past, I don't think anyone deserves to walk that path alone.
I had told myself that I had forgiven him for what he'd done to me, even while I'm still struggling in therapy to recover from it... But I guess I didn't know for sure whether I truly forgave him until I saw the remnants of what appears to have been a mighty internet blitz attack. If I didn't forgive him, I couldn't wish better for him than that. I couldn't hope the way I do that someone is by his side right now, helping him along. If I didn't forgive him, I'd be rejoicing in his public shame and suffering instead of hurting for him the way I do now.
What can I say? The public loves its drama... But I guess I don't. I really did wish better for him.
School Days
The spring semester is in full swing now. By which I mean my online class has met once, and neither of my Saturday/online hybrid classes have met yet. But they will, and soon! ;)
There's something very comforting to me about school. I've always felt at home in the classroom, at ease with my nose in a book, calm and collected while taking tests and writing papers. In a world of chaos and anxiety, school has always been a safe haven for me.
I was diagnosed with Bipolar II Disorder while I was in my third year of undergrad. At the time, I couldn't fully comprehend the meaning of the diagnosis or the impacts it would have on my life. All I understood was that someone was telling me I was sick, that I'd always be sick, that there was no cure, that I'd have to rely on prescription pills for the rest of my life, and that I could barely get out of bed to go to the classes I so deeply valued. I knew there was a stigma about bipolar disorder; I myself had participated in mocking a dormmate's struggle with the disease. Oh, poetic justice! If only everyone who mocked others for their disabilities would then themselves be struck with the very same maladies, if only so they could learn some compassion and understanding!
Now that I am older and have been living with my diagnosis for several years, things like going to class are much easier. I am capable of doing the things that I want to be doing because I am properly medicated, and I can pay full attention in class and perform well on scholastic endeavors. I am greatly enjoying grad school, both because I am back in the comfort of the classroom, and because the subject matter--special education--is so dear to my heart.
When I go to class, I learn both how to educate future students and how to better care for my own daughter. I study techniques for assisting families of children with disabilities, and, in doing so, learn more about my own family dynamic and how I cope with the daily struggles of raising a child with disabilities. I see how many services my family needs, and I take pride and comfort in knowing I will soon be able to share those services with other families in our situation. It's very rewarding, on several levels.
School is a safe world. It's a world where your teachers' only job is to help you succeed, and your hard work and merit determine how you will be judged. Illness isn't a factor. The fact that you could barely manage a trip to the grocery store doesn't matter. All that matters is what happens inside the safety of that classroom. I realize, of course, that not everyone has a similar outlook on education. For some people, the classroom is the scariest place on earth... For me, however, it's an oasis. It's sacred. I am eternally grateful for the opportunities I have had to pursue my educational goals.
There's something very comforting to me about school. I've always felt at home in the classroom, at ease with my nose in a book, calm and collected while taking tests and writing papers. In a world of chaos and anxiety, school has always been a safe haven for me.
I was diagnosed with Bipolar II Disorder while I was in my third year of undergrad. At the time, I couldn't fully comprehend the meaning of the diagnosis or the impacts it would have on my life. All I understood was that someone was telling me I was sick, that I'd always be sick, that there was no cure, that I'd have to rely on prescription pills for the rest of my life, and that I could barely get out of bed to go to the classes I so deeply valued. I knew there was a stigma about bipolar disorder; I myself had participated in mocking a dormmate's struggle with the disease. Oh, poetic justice! If only everyone who mocked others for their disabilities would then themselves be struck with the very same maladies, if only so they could learn some compassion and understanding!
Now that I am older and have been living with my diagnosis for several years, things like going to class are much easier. I am capable of doing the things that I want to be doing because I am properly medicated, and I can pay full attention in class and perform well on scholastic endeavors. I am greatly enjoying grad school, both because I am back in the comfort of the classroom, and because the subject matter--special education--is so dear to my heart.
When I go to class, I learn both how to educate future students and how to better care for my own daughter. I study techniques for assisting families of children with disabilities, and, in doing so, learn more about my own family dynamic and how I cope with the daily struggles of raising a child with disabilities. I see how many services my family needs, and I take pride and comfort in knowing I will soon be able to share those services with other families in our situation. It's very rewarding, on several levels.
School is a safe world. It's a world where your teachers' only job is to help you succeed, and your hard work and merit determine how you will be judged. Illness isn't a factor. The fact that you could barely manage a trip to the grocery store doesn't matter. All that matters is what happens inside the safety of that classroom. I realize, of course, that not everyone has a similar outlook on education. For some people, the classroom is the scariest place on earth... For me, however, it's an oasis. It's sacred. I am eternally grateful for the opportunities I have had to pursue my educational goals.
Thursday, January 19, 2012
Loaner Chair
Yesterday, I got a call from C's PT saying that they had prepared a loaner wheelchair for us to use until the new custom chair comes in. It's the same model and was previously used by a little girl with a latex allergy, so everything on it is latex-free (yay!). A representative from MedTech had to come down and fit the chair with a new seat cushion, new lap belt, and a new chest harness, but now it's essentially the same thing as the chair we ordered. C rode home on the bus in her new (temporary) chair yesterday, and sources say that she loved being able to look out the window and watch everything go by. I also found out yesterday that our insurance has approved C's new chair and all the customizations, and it will be ready in the next 2-3 weeks, meaning we'll have it in time for our next flight to Austin next month! I'm super excited. The only thing we need now is to hire someone to build a wheelchair ramp so I don't have to lift C over the two steps up to our front door every day!
In other news, my PTSD has kicked into overdrive the past few days. Knowing that there's a pending court hearing to extend my Order of Protection for a full year has me thinking more and reliving more. It's uncomfortable, but I'm pushing through. My weekly therapy sessions help, as do my body's survival instincts, such as not being able to cry because it makes me feel more vulnerable. I'm afraid I may come off to hubby as a little bit of an ice queen right now because I can't seem to let my guard down, but he's very understanding and knowledgeable about PTSD, so he gets it. I don't know what I'd do without him.
I understand that several senators decided to oppose SOPA after yesterday's internet-wide protest of the pending legislation, including several of the original sponsors. I hope more follow suit, because internet censorship is not what the world needs. It's dangerous and flat-out wrong, and I am hoping for the best.
In other news, my PTSD has kicked into overdrive the past few days. Knowing that there's a pending court hearing to extend my Order of Protection for a full year has me thinking more and reliving more. It's uncomfortable, but I'm pushing through. My weekly therapy sessions help, as do my body's survival instincts, such as not being able to cry because it makes me feel more vulnerable. I'm afraid I may come off to hubby as a little bit of an ice queen right now because I can't seem to let my guard down, but he's very understanding and knowledgeable about PTSD, so he gets it. I don't know what I'd do without him.
I understand that several senators decided to oppose SOPA after yesterday's internet-wide protest of the pending legislation, including several of the original sponsors. I hope more follow suit, because internet censorship is not what the world needs. It's dangerous and flat-out wrong, and I am hoping for the best.
Wednesday, January 18, 2012
Stop SOPA and PIPA!
Today, I will not be participating in Twitter, blogging activities, or social networking sites in protest of SOPA and PIPA. Wikipedia has information about these destructive pieces of legislation if you're unfamiliar.
Tuesday, January 17, 2012
Going Home
My parents are great, and it's hard for me living half a country away from them. I hated not having my mom around during the pregnancy and not having my parents at the hospital the night C was born. I hated that, while I was singing with the band, they were only able to make a trip out to see me perform once. I hate being too far away for a weekend trip every now and again.
Fortunately for me, I have parents who are willing to fly C and me halfway across the country to visit when I tell them I'm homesick! :)
I have a day off of school in February and no Saturday class the weekend before, so I thought it would be nice to fly down to Austin for a week-long stay. Yes, I was just there for two weeks and got back exactly two weeks ago today... But I'm potentially flying in a friend for Spring Break, so this would be my only chance to visit between now and summer break, and frankly, I don't like being away from Mommy and Daddy for that long. So I'm going to visit!
Going home is always interesting. My mom borders on hoarding, so I never go home without a bag full of new things to bring back with me. There are only a few people in Austin that I feel compelled to see when I visit, and several others who I see every third or fourth visit, so there can be as much or as little socialization in a visit as I would like. My parents are always willing to babysit so I can have dinner out with friends, which is not a luxury we have here.
Then there's the comfort of sleeping in my old room, where I used to use AIM to chat with my then-friend-now-husband, where I daydreamed about the future, where the biggest problems I ever had to face were acne and getting grounded from the phone. Lying in bed in that room, staring at that oh-so-familiar ceiling, gazing out the windows onto my old street... It's like going back to a simpler time, long before I had to struggle with juggling medications, PTSD, or the trials of parenting a child with special needs. I feel somehow freer there, more at ease, like Mom and Dad will take care of anything that comes up, and I'm safe under their protective bubble of a roof.
I love going home, even if it's only for a week at a time, and even if it only happens a couple of times a year. I feel very fortunate that my life is blessed with the opportunity and the means to make the trip as often as I do. So yes, I've only been back for two weeks... But I'm happy that I have less than a month to wait before I'll be back there, in the safe haven of my parents' house, reconnecting with my innocence and youth.
Fortunately for me, I have parents who are willing to fly C and me halfway across the country to visit when I tell them I'm homesick! :)
I have a day off of school in February and no Saturday class the weekend before, so I thought it would be nice to fly down to Austin for a week-long stay. Yes, I was just there for two weeks and got back exactly two weeks ago today... But I'm potentially flying in a friend for Spring Break, so this would be my only chance to visit between now and summer break, and frankly, I don't like being away from Mommy and Daddy for that long. So I'm going to visit!
Going home is always interesting. My mom borders on hoarding, so I never go home without a bag full of new things to bring back with me. There are only a few people in Austin that I feel compelled to see when I visit, and several others who I see every third or fourth visit, so there can be as much or as little socialization in a visit as I would like. My parents are always willing to babysit so I can have dinner out with friends, which is not a luxury we have here.
Then there's the comfort of sleeping in my old room, where I used to use AIM to chat with my then-friend-now-husband, where I daydreamed about the future, where the biggest problems I ever had to face were acne and getting grounded from the phone. Lying in bed in that room, staring at that oh-so-familiar ceiling, gazing out the windows onto my old street... It's like going back to a simpler time, long before I had to struggle with juggling medications, PTSD, or the trials of parenting a child with special needs. I feel somehow freer there, more at ease, like Mom and Dad will take care of anything that comes up, and I'm safe under their protective bubble of a roof.
I love going home, even if it's only for a week at a time, and even if it only happens a couple of times a year. I feel very fortunate that my life is blessed with the opportunity and the means to make the trip as often as I do. So yes, I've only been back for two weeks... But I'm happy that I have less than a month to wait before I'll be back there, in the safe haven of my parents' house, reconnecting with my innocence and youth.
Thursday, January 12, 2012
So, I Have This Reader...
...who hates me. Like, HATES me. All-caps, bold, italicized, should really be about five font sizes larger for emphasis. This particular individual is, for whatever reason, following my blog and twitter posts, despite claiming he wants nothing to do with me. Which, of course, makes no sense. My blog and twitter posts don't go to his inbox, they don't appear on his front step, they're not on the news, and this is the first time I've even directly mentioned him. So why does he read?
My best guess? He's looking for ammunition. He wants to continue to wage war for me over events in the past. Or, perhaps, he's reading because he hopes to see that my life is falling apart or is somehow worse since he exited stage left.
Whatever his reasons for reading, I know he's not finding what he wants, because he's lashing out on me via the internet, posting personal and defamatory information about me and claiming he'll remove it if I "step up" and email him. Well, I'm not going to email him. I'm not going to badmouth him either and tell you all why we had a falling out or anything else about him. I'm not going to retaliate against his web-based harassment by posting personal information about him, or by making accusations cooked up in my imagination with no basis in fact.
I am not going to fight back.
This doesn't mean I'm weak, or that I'm giving in, or that he's won. It simply means I'm not going to put any effort into hatred. He hates me, and that's fine. I, on the other hand, have forgiven him for the wrongs he has committed against me. That doesn't mean I would risk them happening again by involving him in my life. It also doesn't mean I won't use my new pepper spray keychain, suggested by my therapist, if he ever tries to involve himself in my life again. I also will not be dropping the order of protection that I had taken out against him.
I will protect myself and my family, but I won't fight. Especially dirty.
Read all you like. If it makes you angry, then stop. I'm not going to be posting anything about you beyond this post, so there's really no reason for you to stick around. I won't fight with you anymore, ever again. I have forgiven you, and I have moved on. I suggest, for your sake, that you do the same.
My best guess? He's looking for ammunition. He wants to continue to wage war for me over events in the past. Or, perhaps, he's reading because he hopes to see that my life is falling apart or is somehow worse since he exited stage left.
Whatever his reasons for reading, I know he's not finding what he wants, because he's lashing out on me via the internet, posting personal and defamatory information about me and claiming he'll remove it if I "step up" and email him. Well, I'm not going to email him. I'm not going to badmouth him either and tell you all why we had a falling out or anything else about him. I'm not going to retaliate against his web-based harassment by posting personal information about him, or by making accusations cooked up in my imagination with no basis in fact.
I am not going to fight back.
This doesn't mean I'm weak, or that I'm giving in, or that he's won. It simply means I'm not going to put any effort into hatred. He hates me, and that's fine. I, on the other hand, have forgiven him for the wrongs he has committed against me. That doesn't mean I would risk them happening again by involving him in my life. It also doesn't mean I won't use my new pepper spray keychain, suggested by my therapist, if he ever tries to involve himself in my life again. I also will not be dropping the order of protection that I had taken out against him.
I will protect myself and my family, but I won't fight. Especially dirty.
Read all you like. If it makes you angry, then stop. I'm not going to be posting anything about you beyond this post, so there's really no reason for you to stick around. I won't fight with you anymore, ever again. I have forgiven you, and I have moved on. I suggest, for your sake, that you do the same.
Wednesday, January 11, 2012
The 2012 IEP
That was an exhausting 90 minutes.
From a special educator's perspective, that was a fantastic IEP meeting. Everyone talked openly about concerns and desires, mutual agreements were reached on goals across all domains, and the child self-entertained quietly throughout the duration of the meeting. Progress has been made and recorded, and goals are set for the new year. What a winning situation!
From a parent's perspective, that was a little bit soul crushing. My 4-year-old (in 10 days) daughter is no longer functioning on a 9-12 month range as she was at this point last year; now she's in the 12-15 month range. She's progressing across all domains, but at an excruciatingly slow rate. There was a lot of discussion about, but very little change to, her goals from last year, because she only met about 50% of them in the last year and some of her previous goals were deemed "too lofty" to maintain for the next year, so they had to be scaled back. Her primary objective for the last year, which was for her to be able to communicate with others, is nowhere near achieved. I can't imagine any possible scenario in which she will be able to enter kindergarten on schedule, and I have no idea what the long-term indications are of her slow progress.
As an educator writing an IEP, you set goals that you believe are attainable within the next year but that will push the child to grow. As a parent, the goals that are set for the next year feel a little bit like a promise. To see it written on paper that "C will kick a ball" in the next year, then to be told a year later that she will not kick in a ball in the NEXT year but will now be working on the smaller task of "stepping over small obstacles" feels like a promise broken. It's no one's fault that C didn't meet her goal, nor is it anyone's fault that she has less than zero interest in kicking balls so that goal had to change, but to have to see it scaled back to a smaller goal for next year after she spent the last year working toward it... Well, it hurts.
I have to focus on the positives. C made progress in all domains. She is now functioning at a higher level than she was a year ago. Her specialists have found that, with loads of repetition, C eventually understands what is expected of her in her school tasks and can complete them with little support, but she needs that initial bombardment of exposure and repetition to have a chance.
Even while focusing on the positives, I am haunted by a voice resonating in the back of my mind: "C is completely unaware of dangerous situations and requires 100% adult supervision in all tasks." The world is a dangerous enough place when you're prepared for it, but my child is fearless. She doesn't feel physical pain. She would happily chase a yellow ball that was rolling into a burning building or walk out in front of a moving vehicle. The world is an especially dangerous place for her, and she requires CONSTANT supervision. I don't know if that will change over time, if she'll learn about life's hidden and not-so-hidden dangers well enough to be able to avoid them. I don't know if she'll have to be supervised for her entire life in order to keep her safe.
The worst thing about the unknowns of C's medical conditions are the uncertainties about long-term implications. No one can tell me what to expect. There are no studies to consult, no statistics to recite, no parenting books from others who have been through it... Because, quite frankly, no one else has been through it. At least, not in any recorded state. My brother and I are medical groundbreakers, with more information on our children's abilities and conditions than even the geneticists have. We're going in blind, our paths lighted only by the unbridled love we feel for our incredibly unique children.
I know now why I was nervous going into today's IEP meeting: I knew what I was going to hear. There weren't going to be any happy surprises. I wasn't going to learn that she was making up for lost time at a spectacular space, or that she secretly could speak and just wasn't doing it at home. I knew progress had been made, but that it was only in baby steps over the past year. And that scares me about what the next year will--or worse, won't--bring.
From a special educator's perspective, that was a fantastic IEP meeting. Everyone talked openly about concerns and desires, mutual agreements were reached on goals across all domains, and the child self-entertained quietly throughout the duration of the meeting. Progress has been made and recorded, and goals are set for the new year. What a winning situation!
From a parent's perspective, that was a little bit soul crushing. My 4-year-old (in 10 days) daughter is no longer functioning on a 9-12 month range as she was at this point last year; now she's in the 12-15 month range. She's progressing across all domains, but at an excruciatingly slow rate. There was a lot of discussion about, but very little change to, her goals from last year, because she only met about 50% of them in the last year and some of her previous goals were deemed "too lofty" to maintain for the next year, so they had to be scaled back. Her primary objective for the last year, which was for her to be able to communicate with others, is nowhere near achieved. I can't imagine any possible scenario in which she will be able to enter kindergarten on schedule, and I have no idea what the long-term indications are of her slow progress.
As an educator writing an IEP, you set goals that you believe are attainable within the next year but that will push the child to grow. As a parent, the goals that are set for the next year feel a little bit like a promise. To see it written on paper that "C will kick a ball" in the next year, then to be told a year later that she will not kick in a ball in the NEXT year but will now be working on the smaller task of "stepping over small obstacles" feels like a promise broken. It's no one's fault that C didn't meet her goal, nor is it anyone's fault that she has less than zero interest in kicking balls so that goal had to change, but to have to see it scaled back to a smaller goal for next year after she spent the last year working toward it... Well, it hurts.
I have to focus on the positives. C made progress in all domains. She is now functioning at a higher level than she was a year ago. Her specialists have found that, with loads of repetition, C eventually understands what is expected of her in her school tasks and can complete them with little support, but she needs that initial bombardment of exposure and repetition to have a chance.
Even while focusing on the positives, I am haunted by a voice resonating in the back of my mind: "C is completely unaware of dangerous situations and requires 100% adult supervision in all tasks." The world is a dangerous enough place when you're prepared for it, but my child is fearless. She doesn't feel physical pain. She would happily chase a yellow ball that was rolling into a burning building or walk out in front of a moving vehicle. The world is an especially dangerous place for her, and she requires CONSTANT supervision. I don't know if that will change over time, if she'll learn about life's hidden and not-so-hidden dangers well enough to be able to avoid them. I don't know if she'll have to be supervised for her entire life in order to keep her safe.
The worst thing about the unknowns of C's medical conditions are the uncertainties about long-term implications. No one can tell me what to expect. There are no studies to consult, no statistics to recite, no parenting books from others who have been through it... Because, quite frankly, no one else has been through it. At least, not in any recorded state. My brother and I are medical groundbreakers, with more information on our children's abilities and conditions than even the geneticists have. We're going in blind, our paths lighted only by the unbridled love we feel for our incredibly unique children.
I know now why I was nervous going into today's IEP meeting: I knew what I was going to hear. There weren't going to be any happy surprises. I wasn't going to learn that she was making up for lost time at a spectacular space, or that she secretly could speak and just wasn't doing it at home. I knew progress had been made, but that it was only in baby steps over the past year. And that scares me about what the next year will--or worse, won't--bring.
Tuesday, January 10, 2012
Starting Over
In today's mail, I received a DVD with a slideshow of pictures taken the day Hubby and I renewed our wedding vows in October. After a tough EMDR/therapy session and a long, emotional afternoon, seeing those images was just what I needed.
The hubster and I hadn't been getting along very well for a while. We were teetering near the brink of marital disaster, and I wondered what life would be like if I took C and walked away. All around me, marriages were crumbling, and family members were just walking away from years of commitment without any obvious troubles, so it was easy to imagine that I could do it, too.
I thought about it for a long while, and I realized that I had everything to lose and nothing to gain by walking away. I saw that I had turned my back on a love that I cherished, and I had cut myself off from the best friend I had ever known. I resolved to work th
ings out for myself so that we could be happy together, like we had been in the beginning. Then we hit rock bottom. For a week, it looked like there wasn't any choice. We were absolutely doomed. But then... Out of nowhere, hope! It started with a simple, "I love you." It involved many tearful hours of intense conversations about where we were, what we wanted moving forward, and how to get there. Somehow, we fought our way out of the darkness and back into the light.
Love may not conquer all, but it sure can conquer a hell of a lot! We decided that, coming out of our darkest hour, the best way to move forward was to start over, in a sense. We decided to renew our vows. We planned a small, casual event on our alma mater campus and invited a handful of close friends to witness. Then we went to a favorite pub and hung out with fabulous people as a very happy re-married couple. It was truly one of the greatest days of my life. We wrote out our promises to one another and read them in front of the people we loved, while C happily roamed around and played in friends' purses. ;) Honestly, it was beautiful. The only thing about it I would change is the minor hair dye disaster I experienced that made my hair look rather like a Jolly Rancher on our special day!
One of the conditions of our blissful reunion of souls, suggested by myself and agreed upon by my darling, was that I seek out therapy for the PTSD that had been lurking in the shadows and secretly running my life for nearly a decade. He, of course, had always seen it there, and had done everything he could to nourish and support me. I, on the other hand, had been in hardcore denial, because being a victim seemed to mean being weak. As it turns out, it's quite the other way around. Being a victim and identifying yourself as such gives you the strength you need to start to undo the damage of your traumas. Hubby knew this, and he quietly and gently nudged me along until I was ready to realize it for myself.
I do not write about my PTSD or my mental health issues in seek of pity. In fact, the very idea that someone would pity me for any aspect of my life seems ludicrous, because everywhere I look, I see blessings. I write about these things because expressing them helps me to empower myself, to overcome the obstacles in my life, and because there have been countless times when I felt all alone in the world, and I want others out there like myself to be able to stumble across this blog and see that nope, they're not the only ones struggling to make it in this world.
This blog is about a journey. A journey to reclaim my life, reclaim power over my life, and reclaim the unbridled joy I felt before a few jerks cruelly yanked it away. I'm taking it BACK, and how! I still have a long way to go before I'm fully healthy, but I make incredibly progress on a daily basis, and I can't remember ever having felt more loved, more special, or more fulfilled.
The hubster and I hadn't been getting along very well for a while. We were teetering near the brink of marital disaster, and I wondered what life would be like if I took C and walked away. All around me, marriages were crumbling, and family members were just walking away from years of commitment without any obvious troubles, so it was easy to imagine that I could do it, too.
I thought about it for a long while, and I realized that I had everything to lose and nothing to gain by walking away. I saw that I had turned my back on a love that I cherished, and I had cut myself off from the best friend I had ever known. I resolved to work th
ings out for myself so that we could be happy together, like we had been in the beginning. Then we hit rock bottom. For a week, it looked like there wasn't any choice. We were absolutely doomed. But then... Out of nowhere, hope! It started with a simple, "I love you." It involved many tearful hours of intense conversations about where we were, what we wanted moving forward, and how to get there. Somehow, we fought our way out of the darkness and back into the light.
Love may not conquer all, but it sure can conquer a hell of a lot! We decided that, coming out of our darkest hour, the best way to move forward was to start over, in a sense. We decided to renew our vows. We planned a small, casual event on our alma mater campus and invited a handful of close friends to witness. Then we went to a favorite pub and hung out with fabulous people as a very happy re-married couple. It was truly one of the greatest days of my life. We wrote out our promises to one another and read them in front of the people we loved, while C happily roamed around and played in friends' purses. ;) Honestly, it was beautiful. The only thing about it I would change is the minor hair dye disaster I experienced that made my hair look rather like a Jolly Rancher on our special day!
One of the conditions of our blissful reunion of souls, suggested by myself and agreed upon by my darling, was that I seek out therapy for the PTSD that had been lurking in the shadows and secretly running my life for nearly a decade. He, of course, had always seen it there, and had done everything he could to nourish and support me. I, on the other hand, had been in hardcore denial, because being a victim seemed to mean being weak. As it turns out, it's quite the other way around. Being a victim and identifying yourself as such gives you the strength you need to start to undo the damage of your traumas. Hubby knew this, and he quietly and gently nudged me along until I was ready to realize it for myself.
I do not write about my PTSD or my mental health issues in seek of pity. In fact, the very idea that someone would pity me for any aspect of my life seems ludicrous, because everywhere I look, I see blessings. I write about these things because expressing them helps me to empower myself, to overcome the obstacles in my life, and because there have been countless times when I felt all alone in the world, and I want others out there like myself to be able to stumble across this blog and see that nope, they're not the only ones struggling to make it in this world.
This blog is about a journey. A journey to reclaim my life, reclaim power over my life, and reclaim the unbridled joy I felt before a few jerks cruelly yanked it away. I'm taking it BACK, and how! I still have a long way to go before I'm fully healthy, but I make incredibly progress on a daily basis, and I can't remember ever having felt more loved, more special, or more fulfilled.
Monday, January 9, 2012
Happiness
Happiness. It's so simple, to be happy. It's what everyone is ultimately seeking. We fall in love because we want to be happy, we have children because we want to be happy, we eat to be happy, we sleep to be happy, we pick out our clothes to be happy... Everything seems to boil down to happiness, whether in tiny bits or in abundance.
Sadly, all too often, we stand in the way of our own happiness. We make decisions that we know will blow up in our faces, we seek out things that might make us happy in the short-term but that will cause suffering in the long-term. We gamble the happiness we have in favor of the promise of a greater happiness, which can be a dangerous wager. I know there have been countless times in my life when I've turned a blind eye to my own happiness because I thought I wanted more, or because I thought being unhappy was somehow preferable to just living a simple, happy life. I've grown past that now. I recognize the beauty in my life, however simple it may seem, and I am embracing it. I have learned to cherish what I have and, while I still have dreams, I know better than to risk everything for something that might not make me happy in the end.
Some people, though, choose to revel in misery. They choose not to be happy with their lot, to be discontent, and even to bring others down with them. They are unhappy because they choose to be, and, as long as they're miserable, they may as well have as much company as they can get. They lie, they cheat, they steal, they sabotage, they manipulate, they take, they punish, and they bully. They do absolutely anything in their power to bring misery to others because it just doesn't seem fair that others should be happy when they themselves aren't.
Those people know who they are. If you're reading this, you know if you're more of a happy person or a miserable person, and you know what choices you tend toward. Of course, almost everybody is some combination of both, because people just aren't perfect.... But there IS a choice. A choice to be happy and spread happiness, or a choice to be miserable and to spread misery.
Personally, I chose to be happy, and what do you know? Happiness overwhelmed me. As long as I continue to choose happiness, no one can take that away from me. But if you choose misery... Well, it's not difficult to beat down someone who's already crawling in the dirt.
I challenge you all to evaluate your lives and choose happiness. Choose to be grateful for what you have instead of envious of that which you don't. Choose to love those in your life instead of pushing people away. Choose to be happy, and you might just surprise yourself with just how happy you find yourself to be.
Sadly, all too often, we stand in the way of our own happiness. We make decisions that we know will blow up in our faces, we seek out things that might make us happy in the short-term but that will cause suffering in the long-term. We gamble the happiness we have in favor of the promise of a greater happiness, which can be a dangerous wager. I know there have been countless times in my life when I've turned a blind eye to my own happiness because I thought I wanted more, or because I thought being unhappy was somehow preferable to just living a simple, happy life. I've grown past that now. I recognize the beauty in my life, however simple it may seem, and I am embracing it. I have learned to cherish what I have and, while I still have dreams, I know better than to risk everything for something that might not make me happy in the end.
Some people, though, choose to revel in misery. They choose not to be happy with their lot, to be discontent, and even to bring others down with them. They are unhappy because they choose to be, and, as long as they're miserable, they may as well have as much company as they can get. They lie, they cheat, they steal, they sabotage, they manipulate, they take, they punish, and they bully. They do absolutely anything in their power to bring misery to others because it just doesn't seem fair that others should be happy when they themselves aren't.
Those people know who they are. If you're reading this, you know if you're more of a happy person or a miserable person, and you know what choices you tend toward. Of course, almost everybody is some combination of both, because people just aren't perfect.... But there IS a choice. A choice to be happy and spread happiness, or a choice to be miserable and to spread misery.
Personally, I chose to be happy, and what do you know? Happiness overwhelmed me. As long as I continue to choose happiness, no one can take that away from me. But if you choose misery... Well, it's not difficult to beat down someone who's already crawling in the dirt.
I challenge you all to evaluate your lives and choose happiness. Choose to be grateful for what you have instead of envious of that which you don't. Choose to love those in your life instead of pushing people away. Choose to be happy, and you might just surprise yourself with just how happy you find yourself to be.
Saturday, January 7, 2012
Off to a Good Start!
So far, 2012 is treating my little family well. We got home in time for lunch together on Tuesday afternoon, and Thursday I had to drive out to Sacramento for an early-morning urology appointment at Shriners on Friday. C passed her tests with flying colors! I wasn't particularly worried about her bladder and kidneys after her vesicoureteral reflux resolved a few years back, but it was comforting to have confirmation that the condition hasn't recurred.
Classes don't start back up for a couple of weeks, so I have some time to play catch-up around the house and with work stuff before my schedule fills up again. C's school starts Monday, and I'm looking forward to getting her back into a steady routine. She had a great time with the vacation and our trip to Sacramento, basically running amok and sleeping where and when she chose. She also ate a half-gallon tub of shortbread cookies over 3 days, which may seem like bad mothering until you take into consideration that this is a child who is severely underweight and whose pediatrician and nutritionist have recommended giving her as many calories as possible in any form she'll eat, provided that she still gets the bulk of her nutrition from Pediasure. She gained 0.6lbs in two weeks. I'm pretty pleased, and thinking I need to find a recipe for shortbread cookies! ;)
My favorite meal of our trip, despite several great meals, was the luxurious small plate offerings at Barleyswine. I can't recommend that place enough to anyone in or visiting the Austin area, and I will be sure to visit it on each trip home. I doubt I'll ever forget that meal! My favorite moment of the trip would normally be Christmas Eve, surrounded by my enormous extended family, sitting on the carpet in my grandparents' great room, singing Christmas carols with my aunts, uncles, cousins, nephews, and all the other kiddos... I mean, really, that's a hard moment to beat! But no, something else managed to squeeze in and take the glory. My favorite moment of the trip was when hubby, who absolutely REFUSES to dance, danced with me in the hotel elevator on our anniversary night. It was a glass elevator, so our dancing was visible to all, and we danced to the music floating up from the hotel lobby below. Even when someone got in the elevator with us, he didn't stop dancing. Those are the moments that take your breath away. :)
Classes don't start back up for a couple of weeks, so I have some time to play catch-up around the house and with work stuff before my schedule fills up again. C's school starts Monday, and I'm looking forward to getting her back into a steady routine. She had a great time with the vacation and our trip to Sacramento, basically running amok and sleeping where and when she chose. She also ate a half-gallon tub of shortbread cookies over 3 days, which may seem like bad mothering until you take into consideration that this is a child who is severely underweight and whose pediatrician and nutritionist have recommended giving her as many calories as possible in any form she'll eat, provided that she still gets the bulk of her nutrition from Pediasure. She gained 0.6lbs in two weeks. I'm pretty pleased, and thinking I need to find a recipe for shortbread cookies! ;)
My favorite meal of our trip, despite several great meals, was the luxurious small plate offerings at Barleyswine. I can't recommend that place enough to anyone in or visiting the Austin area, and I will be sure to visit it on each trip home. I doubt I'll ever forget that meal! My favorite moment of the trip would normally be Christmas Eve, surrounded by my enormous extended family, sitting on the carpet in my grandparents' great room, singing Christmas carols with my aunts, uncles, cousins, nephews, and all the other kiddos... I mean, really, that's a hard moment to beat! But no, something else managed to squeeze in and take the glory. My favorite moment of the trip was when hubby, who absolutely REFUSES to dance, danced with me in the hotel elevator on our anniversary night. It was a glass elevator, so our dancing was visible to all, and we danced to the music floating up from the hotel lobby below. Even when someone got in the elevator with us, he didn't stop dancing. Those are the moments that take your breath away. :)
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