Sitting in the dark of, yet another, stale hospital room. It makes me think. Life started this way for SS too. From day one, it was hospitals, doctors, and tests. I remember needing an x-ray on my foot and them forcing me to take a pregnancy test. I remember nearly fainting in fear when the doctor told me I was pregnant again. I remember the hushed and hurried calls to the OB, requesting me to be seen the next day. I remember the OB rushing me off to the perinatologist for in depth ultrasounds at 10 weeks. I remember the whispers and request that I return in 4 weeks for more tests. I remember the night I went into preterm labor and the subsequent nights spent up every 4 hours taking medication. There were tons of hospital visits and even more doctors visits, even before she was born. Before there was autism, there was ALWAYS something with her.
Here we are again. Leads and wires sticking out all over the place to monitor her every move and breath. This is the second time this year she has been hooked into a computer like an extra mainframe, but it won't be the last.
I look at her innocent little face, all covered in wires and tape, and think, "Does it end? Will there ever be answers for her?"
She is nine years old now. In nine years, we have seen more specialists for her than I have ever seen in my life. Yet, we have less answers than we did. How is that?
First, there was PDD-NOS and Sensory Processing Disorder. I was alright with that. It hit home hard, her being the second child diagnosed with ASD in a year, but we rolled with it.
Then the seizures started. She was diagnosed with Childhood Seizure Disorder. That was like a knife to the eye. It was so terrifying and unexpected that as her mother, I was certain it couldn't get worse. That was her first round of wires. We went two years with medications, and when she seemed to be growing out of them, we took her off.
Not six months later, came the ADHD diagnosis. We expected that. We waited to see if we could find an alternative to medication, but nothing worked, so on the medicine she went. Six months after that, she started having seizures again and was found wandering in school alone. That kicked off round two of the testing and monitoring. EEG's and other such tests were ordered. We were in the hospital for 2 days for them. Nothing was ever found and they subsided to about one every 3 months. They were diagnosed as absence seizures and we opted to keep her off medication since they were so infrequent.
Nine months later, she had a cancer scare. The left side of her neck and face swelled to the size of a golf ball. The tests that went into diagnosing what it was were numerous. Blood tests, urine tests, and x-rays. When they found it was not cancer, but a rare form of cat scratch fever that was resistant to medication as a solitary treatment, there was a CT ordered. Then the poor dear ended up with a needle in her lymph node to drain it. She had to remain awake for the procedure and was so brave.
A few months ago, the seizures started up again. We switched pediatricians due to insurance issues at that time. We ended up with new everything, including a new neurologist. This neurologist decided to throw out the seizure diagnosis as definite because the EEG's never showed anything. She ordered more tests to be done. She asked me to keep a journal. I did so and with astounding results. I even got an episode on tape. The neurologist said it didn't look like anything she had seen. She said to go through with all the tests and if they reveal nothing, she will refer her to yet another specialist.
Another set of wires later, we had MRI results stating there was a small mass, likely uneventful, in her pituitary gland. Another MRI was ordered for 6 months later and a referral to the neurosurgeon was ordered.
And here we sit. More wires. More monitoring. This is just a sleep study and really a non-event, but in the dark, I can't help but wonder. We have another EEG scheduled for next month sometime, a psychiatrist appointment, and a neuropsychiatrist appointment all coming up before the end of the year. Those are just the ones we are absolutely sure of. How many more? Where are those answers?
We started with a straight forward diagnosis and a reasonable expectation. Today, I sit in this unyielding chair watching my baby girl, realizing we are further away than we were. Where there were answers, there are now questions. Where she has ASD and CSD, she now has a big question mark. Yeah, they know it's ASD, but as for the other things, they have no answers. They don't even know how much her ASD is affecting her functioning. They don't know what is affecting anything at any given time. What does that mean? It means I have no answers.
This is one of those days where I wish life were different. Not because it's hard, or because it's frustrating, but simply for her. It hurts my soul to see her so comfortable with wires and staying overnight in the hospital. It makes my heart bleed for her when she recalls with vivid detail, all of the things she has been through, and doesn't show fear or apprehension. She shows to the nurses and doctors that this is normal. It is a part of her life. That kills me. I wish it wasn't. I wish she didn't have that ease and familiarity with all of this. No child asks for this. No parent should go through it. Yet, here we are, again.
Sunday, September 29, 2013
Tuesday, September 24, 2013
Screaming Myself Hoarse.....
I am so angry right now. I just literally screamed myself hoarse and threw my computer (which thankfully isn't broken now). I don't even know what to do anymore. I have done everything and more to see my son succeed in school and we are STILL running into the same shit we run into every year. He forgets to turn in his homework, or won't turn in partial for partial credit because it isn't to his standards. I know, logically, that I have done and am doing all I can, but sometimes, it feels like he is just kicking me. I hate that I can't make him understand. I know that there is a communication issue, due mostly to our differing ways of thinking. It doesn't stop me from wondering if I am doing something wrong.
I tried to get him that IEP and they shot him down without even testing him. They left me with a badly done denial, with no basis in fact. Sure, I have an appointment with an advocate, but is it going to come too late? My kid's grades are dropping rapidly and he is getting nailed at school and at home from all of us. I don't know how to not be mad. I have bent over backwards to try and help him get this system and to get him the help he needs in this system and it just falls flat. Everything just falls flat.
I am going through my own crap and don't know how much I can take on top of everything. I feel like a failure when my son, whom is acing tests, is failing because he isn't turning in work. Despite the fact that I specifically requested an FBA for this specific issue, I was denied. How do I help this kid? I can't. He needs help. I need help. We need help. There is no help. I hope the advocate can fix this, because he needs that help. I am at a loss. I supposed I could try and walk him to every class, but alienating the child who is already different, doesn't seem like a good idea.
I'm so tired of crying. I'm tired that my pleas for help fall on deaf ears. How much is my son supposed to actually fail, before they show him compassion and help him where he needs it? How am I supposed to just accept that he IS failing because it is a functional issue that I know mostly stems from the structure of his neurology? I feel like I have been through all the volumes, from polite to this. I feel like my throat is bleeding and my tears are dry because I have been standing SCREAMING for someone to help my kid. Nobody ever does. When he was little, it didn't matter so much because we knew he was learning. Now, it matters. His grades matter. He matters. Yet, I'm still screeching myself hoarse for something that is blatantly obviously a need for him.
I got angry and yes, I yelled at my son. I want to apologize and at the same time, I know I can't. To apologize means that you are sorry you said what you did. I meant every word. If there is only us and him, then he has to pull some of that weight. What isn't fair is that all of us are completely losing it over this. He needs help and reminders and Puck and I can't do that all the time. We can't be the little people on his shoulder, telling him what to do. We need the school to step up and do it. He is learning and scoring his tests perfectly, but he is failing because he doesn't remember to turn his work in. So, what we have here, is a failure on the district's part, for failing to heed my advice and really listen to my request. Now, even if we get them to rescind their denial and test him, the damage is done. His grades are failing. So, because he is not getting what he needs, he pays the price for their denial. He has to rebuild his grades when they would never have gotten there with the help he should be getting. It makes me so sick to think about it.
I tried to get him that IEP and they shot him down without even testing him. They left me with a badly done denial, with no basis in fact. Sure, I have an appointment with an advocate, but is it going to come too late? My kid's grades are dropping rapidly and he is getting nailed at school and at home from all of us. I don't know how to not be mad. I have bent over backwards to try and help him get this system and to get him the help he needs in this system and it just falls flat. Everything just falls flat.
I am going through my own crap and don't know how much I can take on top of everything. I feel like a failure when my son, whom is acing tests, is failing because he isn't turning in work. Despite the fact that I specifically requested an FBA for this specific issue, I was denied. How do I help this kid? I can't. He needs help. I need help. We need help. There is no help. I hope the advocate can fix this, because he needs that help. I am at a loss. I supposed I could try and walk him to every class, but alienating the child who is already different, doesn't seem like a good idea.
I'm so tired of crying. I'm tired that my pleas for help fall on deaf ears. How much is my son supposed to actually fail, before they show him compassion and help him where he needs it? How am I supposed to just accept that he IS failing because it is a functional issue that I know mostly stems from the structure of his neurology? I feel like I have been through all the volumes, from polite to this. I feel like my throat is bleeding and my tears are dry because I have been standing SCREAMING for someone to help my kid. Nobody ever does. When he was little, it didn't matter so much because we knew he was learning. Now, it matters. His grades matter. He matters. Yet, I'm still screeching myself hoarse for something that is blatantly obviously a need for him.
I got angry and yes, I yelled at my son. I want to apologize and at the same time, I know I can't. To apologize means that you are sorry you said what you did. I meant every word. If there is only us and him, then he has to pull some of that weight. What isn't fair is that all of us are completely losing it over this. He needs help and reminders and Puck and I can't do that all the time. We can't be the little people on his shoulder, telling him what to do. We need the school to step up and do it. He is learning and scoring his tests perfectly, but he is failing because he doesn't remember to turn his work in. So, what we have here, is a failure on the district's part, for failing to heed my advice and really listen to my request. Now, even if we get them to rescind their denial and test him, the damage is done. His grades are failing. So, because he is not getting what he needs, he pays the price for their denial. He has to rebuild his grades when they would never have gotten there with the help he should be getting. It makes me so sick to think about it.
Sunday, September 15, 2013
Sleep in Peace...
Here I am, up at midnight, as usual. Night terrors, broken ears, and shenanigans abound this evening. I often write at night because that is when it is most peaceful, but tonight, I feel anything but that. I have this vast stream of consciousness just rolling through my head and it is keeping me awake and full of anxiety. I don't have a particular point to make this evening, as I usually do, but I have a few confessions to make. Being that I am essentially sitting on the eve of a new beginning, I should probably receive my last rights and make my final confessions on this part of life I am leaving behind. (No, I am not catholic, but sometimes, a confession is worth more to the soul than one realizes.)
I am tired. I am so exhausted and, honestly, not sure how to deal with that. I have always been the strong one. I show no weakness because it can be used against me. I face the world head on. If I get knocked down, I get up. Sometimes, though, I don't want to. There are days when the world knocks me down and I think it just might be better to lie there and take it. I have spent the better part of 10 years, fighting for one thing or another. I am so tired of fighting. I am tired of fighting with the system and society. I am tired of fighting with my loved ones, both past and present. I am just tired.
I love my children with all my heart and soul, but there are days, when I wonder what life would be like if they didn't have autism. Would they still struggle with the compulsion that nearly rules our life? Would I be so secretly angry all the time? If I am being truthful with myself, I AM angry. I am angry that I can't help or understand my kids. I am pissed to hell that these issues are causing a ripple effect that is weakening the fabric of our family. We are a strong family, but lately, it is getting hard. I love the quirks that come with my kids. They teach me things daily. That doesn't mean that there aren't days where I absolutely HATE autism. Today, I hate autism. I hate compulsive disorder. I hate learning disorders. I am so damned frustrated trying to teach my daughter, that sometimes, stabbing myself in the eye sounds wonderful. I am so tired of the cycle of compulsive activities that run rampant in this house. They take it, hide it, lie about it, get caught, and melt down because they realize they don't completely control it, and now think they are the worst kid in the world. I am not saying they aren't responsible, but dammit, it isn't all their fault. I am tired of having to pick and choose my battles with autism. I feel like somewhere I went wrong, even though I know I didn't. It's so incredibly screwed up. The children's autism has me so torn on how to feel. I want them to understand what they are doing, but don't want to make the situation worse. I want to rail at their father for passing it on. I want to just beat his chest and cry. Yeah, today, I really hate autism. Regardless, show no weakness. Every fiber of my being is saying, "Hold your head high. Don't let them see you cry. You cannot afford to show weakness."
I know I mentioned having made an appointment with DV for this Monday. I wonder how many people realize how much just walking in there, is going to cost me. It is like a full on admission that I HAVE a weakness. What's worse, is it is an admission that someone holds dominion over me without my consent. Through fear, emotional, and mental abuse, somebody is able to make me feel weak. I have to walk in there and admit that. I have to ask for help. I cannot remember the last time I asked for serious help. I'm not even sure that there ever was a time that I did. I have always been the grown up. I have always been the one that helped others find their strength. Now, I am about to walk into a building full of strangers, and admit that when it comes to a certain person, I don't have that strength. A PERSON!
The really screwed up thing is that, somewhere, I have had my mind warped so badly, that I feel like I am committing a massive betrayal. My head is so foggy regarding the whole situation, that it feels wrong to seek help for this. How dare I admit this? How mad is the person going to be? Pretty freaking mad. I know that. I also know that if I don't do this, I am displaying an even bigger weakness, in allowing the manipulation and fear tactics continue. This is what has been playing through my head as the day approaches. The head games were so bad that I am questioning whether it is all just a matter of perception. I know it's not. I know that the level of anxiety, to the point of panic attacks, at just the thought of this person, is not normal. I know that it is getting worse and that I have to do something about it. I need help. It feels wrong to even say that, but it is true.
It all circles around to being tired of the way I have been feeling. I have been living in abject fear for years. I am so tired of fighting. I am so tired of being accused of this or that, when in reality, all I am doing is trying to make life easier on my children. I have had enough. I will do this because I no longer feel I have a choice, but I don't know what this is going to do to me. The move is a good one, but how many old wounds can one open without bleeding to death? I wonder that. I am not a one antic at a time person. If I am going to do this, I am going to do it with all of me. That means admitting I am weak in this area. It means that I am going to rip everything wide open. I am going to grieve for myself. I am going to grieve for the girl that is now gone. I know this. I am not sure that I am ready for it, but ready or not, it is no longer something I can avoid.
I don't know how to do this. I know that I need to tell the absolute truth, no matter how damning it is for the other person, or how painful it is for me. I know that I am opening a proverbial Pandora's box. I am strong enough to pry open that box, but I also know that it contains my own kryptonite. Facing the ghosts of my past is not something I am looking forward to. I talk here and there of little things. I wrote a blog about the stuff I don't talk about, but it honestly, was mild. I don't think one person in this universe knows the whole scope of what I endured. I wonder how much I really remember and how much I have buried. I guess I can wonder all I want, because I am going to find out.
They say the more water that pours through a crack, the wider it gets. I think I am about to unleash a torrential river of emotions and memories. Some of which I remember and have shared. Some of them, I remember, but have never shared. More comes to me everyday this appointment gets closer, but I know there is so much more that I have pushed back so far, because it just hurts too much. I think that I have to hurt to heal. I have to be weak to gain strength. In doing so, I will learn something about myself, but more importantly, I will finally take my life back. I am so tired of walking on eggshells and living in fear. So tired of fighting. I am just so done.
Well, as per usual, the midnight musings of the sleep deprived have taken a more direct approach, but I stand by what I have said. I don't know how to show weakness. I am going to learn that. I am going to face my own fear and show it. I am not so patiently waiting for the new psychiatrist for the children, in hopes that we can at least curb some of the behaviors that are ripping into us. I am going to get them what they need. I cannot do that alone either. I will be asking for help there too. I am going to seek out healing for myself, despite feeling vulnerable in every way. Asking for help and showing weakness is something that I am not accustomed to, but it's not wrong. It's human. I have all these things running around in my head that are making me uneasy and I can't sleep. Maybe it really is time for me to admit my own shortcomings and seek help. Maybe then, I can sleep in peace, without fear.
I am tired. I am so exhausted and, honestly, not sure how to deal with that. I have always been the strong one. I show no weakness because it can be used against me. I face the world head on. If I get knocked down, I get up. Sometimes, though, I don't want to. There are days when the world knocks me down and I think it just might be better to lie there and take it. I have spent the better part of 10 years, fighting for one thing or another. I am so tired of fighting. I am tired of fighting with the system and society. I am tired of fighting with my loved ones, both past and present. I am just tired.
I love my children with all my heart and soul, but there are days, when I wonder what life would be like if they didn't have autism. Would they still struggle with the compulsion that nearly rules our life? Would I be so secretly angry all the time? If I am being truthful with myself, I AM angry. I am angry that I can't help or understand my kids. I am pissed to hell that these issues are causing a ripple effect that is weakening the fabric of our family. We are a strong family, but lately, it is getting hard. I love the quirks that come with my kids. They teach me things daily. That doesn't mean that there aren't days where I absolutely HATE autism. Today, I hate autism. I hate compulsive disorder. I hate learning disorders. I am so damned frustrated trying to teach my daughter, that sometimes, stabbing myself in the eye sounds wonderful. I am so tired of the cycle of compulsive activities that run rampant in this house. They take it, hide it, lie about it, get caught, and melt down because they realize they don't completely control it, and now think they are the worst kid in the world. I am not saying they aren't responsible, but dammit, it isn't all their fault. I am tired of having to pick and choose my battles with autism. I feel like somewhere I went wrong, even though I know I didn't. It's so incredibly screwed up. The children's autism has me so torn on how to feel. I want them to understand what they are doing, but don't want to make the situation worse. I want to rail at their father for passing it on. I want to just beat his chest and cry. Yeah, today, I really hate autism. Regardless, show no weakness. Every fiber of my being is saying, "Hold your head high. Don't let them see you cry. You cannot afford to show weakness."
I know I mentioned having made an appointment with DV for this Monday. I wonder how many people realize how much just walking in there, is going to cost me. It is like a full on admission that I HAVE a weakness. What's worse, is it is an admission that someone holds dominion over me without my consent. Through fear, emotional, and mental abuse, somebody is able to make me feel weak. I have to walk in there and admit that. I have to ask for help. I cannot remember the last time I asked for serious help. I'm not even sure that there ever was a time that I did. I have always been the grown up. I have always been the one that helped others find their strength. Now, I am about to walk into a building full of strangers, and admit that when it comes to a certain person, I don't have that strength. A PERSON!
The really screwed up thing is that, somewhere, I have had my mind warped so badly, that I feel like I am committing a massive betrayal. My head is so foggy regarding the whole situation, that it feels wrong to seek help for this. How dare I admit this? How mad is the person going to be? Pretty freaking mad. I know that. I also know that if I don't do this, I am displaying an even bigger weakness, in allowing the manipulation and fear tactics continue. This is what has been playing through my head as the day approaches. The head games were so bad that I am questioning whether it is all just a matter of perception. I know it's not. I know that the level of anxiety, to the point of panic attacks, at just the thought of this person, is not normal. I know that it is getting worse and that I have to do something about it. I need help. It feels wrong to even say that, but it is true.
It all circles around to being tired of the way I have been feeling. I have been living in abject fear for years. I am so tired of fighting. I am so tired of being accused of this or that, when in reality, all I am doing is trying to make life easier on my children. I have had enough. I will do this because I no longer feel I have a choice, but I don't know what this is going to do to me. The move is a good one, but how many old wounds can one open without bleeding to death? I wonder that. I am not a one antic at a time person. If I am going to do this, I am going to do it with all of me. That means admitting I am weak in this area. It means that I am going to rip everything wide open. I am going to grieve for myself. I am going to grieve for the girl that is now gone. I know this. I am not sure that I am ready for it, but ready or not, it is no longer something I can avoid.
I don't know how to do this. I know that I need to tell the absolute truth, no matter how damning it is for the other person, or how painful it is for me. I know that I am opening a proverbial Pandora's box. I am strong enough to pry open that box, but I also know that it contains my own kryptonite. Facing the ghosts of my past is not something I am looking forward to. I talk here and there of little things. I wrote a blog about the stuff I don't talk about, but it honestly, was mild. I don't think one person in this universe knows the whole scope of what I endured. I wonder how much I really remember and how much I have buried. I guess I can wonder all I want, because I am going to find out.
They say the more water that pours through a crack, the wider it gets. I think I am about to unleash a torrential river of emotions and memories. Some of which I remember and have shared. Some of them, I remember, but have never shared. More comes to me everyday this appointment gets closer, but I know there is so much more that I have pushed back so far, because it just hurts too much. I think that I have to hurt to heal. I have to be weak to gain strength. In doing so, I will learn something about myself, but more importantly, I will finally take my life back. I am so tired of walking on eggshells and living in fear. So tired of fighting. I am just so done.
Well, as per usual, the midnight musings of the sleep deprived have taken a more direct approach, but I stand by what I have said. I don't know how to show weakness. I am going to learn that. I am going to face my own fear and show it. I am not so patiently waiting for the new psychiatrist for the children, in hopes that we can at least curb some of the behaviors that are ripping into us. I am going to get them what they need. I cannot do that alone either. I will be asking for help there too. I am going to seek out healing for myself, despite feeling vulnerable in every way. Asking for help and showing weakness is something that I am not accustomed to, but it's not wrong. It's human. I have all these things running around in my head that are making me uneasy and I can't sleep. Maybe it really is time for me to admit my own shortcomings and seek help. Maybe then, I can sleep in peace, without fear.
Friday, September 13, 2013
Patience and Acceptance.....
When I was younger, my mother always told me that patience and acceptance were a virtue. I grew up with this little gem in my head, and never once thought about it. As I hit my teen years, and even early adulthood, I was full of both, even when it killed me. Yeah, I was a typical teen girl that did stupid stuff, but for the most part, I was a good girl. I had a year or two where I wasn't so good, but I just waited and rolled with the punches. Somehow, I ended up in hell. I climbed out of that pit, covered in my own blood, sweat, and tears, with my children on my back and realized something. Patience and acceptance being a virtue is like saying, "Sit and wait for satisfactory." I deserve more and my kids sure as hell do too.
These last few weeks have been one pit of hell after another. As soon as I stand on my own feet, hands and nails scratched and torn from the fight, I fall into another one. I am not a quitter, so I bandage, fall, and repeat with every pit I stumble into, but there are days where I feel like I'm in the Fire Swamps. Some days I don't know if I am going to fall into another fiery pit or just get eaten alive by a nasty big rat. Those are the days where it is always something.
My kid has something in her brain. Sure, it is supposed to be harmless, but what it really is supposed to be, is NOT THERE! The neurologist has calmly told me several times that she is just a walking puzzle and that if she could diagnose my daughter as such, she would. The school is now REFUSING to test either child for an IEP. We didn't even get out the door with that one. We met with the county psychiatrist for intake, they talked with me (my children's teacher) for maybe an hour, and back to his stupid cubicle he went. He went over grades and state scores. He looked and saw that in two weeks, it would be three years since the last request to test. He then typed up a nice little letter and sent it to me, refusing testing based on their academic scoring. Wow! I have never seen someone discriminated for their intelligence. It's new. I'm adjusting (while loading my proverbial guns). Apparently, only children who don't academically hit the "smart marker" are considered.
It was noted that they spoke to my daughter's teacher and that she stated there were no problems she sees. I was certain I was homeschooling, but maybe that is in that other reality. I'm not sure. It was also noted that her previous testing for IEP (done in her "bonus year" of kindergarten, after they dropped her IEP illegally) was just fine, so she is doing well. So, basically, the test they administered for her on a beginning kindergarten level, after a year of preschool and a previous year of kindergarten, were just fine. Her grades until now have been on standards. Her state test scores are averaging above average (Even if her writing skills are below the 50th percentile, she can READ! YAY!). They are walking a line with me on this one. All I have to do is request in two weeks and they MUST test her. Waiting was not their smartest idea, as I have already set an advocate meeting in motion. Obviously, my daughter stating that her pencil writes something different than what is in her head is not a problem. According to the district, it is NORMAL. So, following that line of logic, it is normal for her to have so much anxiety at the THOUGHT of writing that her heart races and tears form. The fact that she is 3 weeks behind in Literature because of this is normal. Oh, also, did you know that it is perfectly fine for a parent to transcribe for a child in school without an IEP? I did not. (It's not. I just love that they tried to tell me it is.) This is just her.
I got the same letter for my son. His was almost better. They sited the same reasoning, but also said that he does not engage in behaviors that hinder his or others' studies. So, it was someone else's kid that stole a laptop from school the day he was unmedicated? Good to know! It was noted that "he got a D in math last year for missing assignments, but it should be noted that he was a 6th grader in an 8th grade algebra class." What it really should be noted, is that the same student, is now a 7th grader in a 9th grade geometry class getting an A. So, the idea that he doesn't need help with executive functioning is just my imagination. Interesting. I guess the fact that I can access his work from home and ride his ass is good enough. He doesn't need help to learn how to do things on his own. As far as speech goes, they "don't give children speech services for pragmatics." Really? That is funny, I could swear the IEP he had when he came into the state was almost exclusively FOR pragmatics. Are we looking at the same paper? I do not think you see, what I think you are seeing.
I am in the process of throwing this all back in their faces. I do have an appointment with an advocate coming up in two weeks. As a matter of fact, I have a lot of appointments in the next two weeks. I meet Monday to deal with my own personal demons, which are actually starting to attack, being that it is Friday night. My daughter has a sleep study in two weeks. Both kids go to the psychiatrist for the big bad med shuffle the first week of October. The neurologist called to confirm a referral for the surgeon (just in case) and to tell me that my daughter has now been put at the TOP of the busy neuropsych's scheduling list. They also confirmed an overnight EEG next month. I have more appointments than I am honestly ready to take on. I have more fights than I am ready for. Be patient. NO! I have called all these people various times, due to being patient long enough. Those are my children. I am done waiting for them to do something, so I forced the issue. Accept. NO! I refuse to accept that you know who my kids are or what they do and do not need based on scanning some pieces of paper. No behavioral issues?!?! Would you like a list? I have one for both home and school.
I think the thing that pushed me to the point of seeking out the advocate before the letter was the ease of which that man dropped the letters A D H D. My children are well controlled on their medications. I mean, if they can guarantee they won't be expelled or fail all their classes, I would be happy to take them off their medication for a week and let them observe, but they can't. Then, when the letter reached me and my son's was all about no detrimental behavior, that was it. They used the term "stealing" on a county document, instead of the correct diagnosed term for what my son deals with, compulsion. This is gonna get ugly folks. My life is about to slip into the mud, and you know what, I don't mind.
Yeah, it's scary to look forward and see the piles of shit you have to wade through to get to that point you need to be. I'm terrified. Some nights I shake so hard, from the stress of it all. I am still trying to figure out how they switched me at birth, but I am not built or equipped to be the person I was raised to be. I cannot be patient when it is my or my children's livelihood at stake. I refuse to accept second best for me or them. I can't do it. So, yeah, I'm about to get a little dirty. Ok, so I am about to get a LOT dirty, but it is of my choosing and design. I can't name the times that I have stated that my life starts here. However, maybe I am using that term as a way to say, "I choose this path. I choose the hard path because it is the right one."
That is what I am doing again. This is another crossroads in my life. I can be patient and hope that everything turns out ok. I could except the outcome and go with the system, but I won't. I CHOOSE this path full of potholes, dirt, fights, and personal anguish. I CHOOSE it. It is the right path. I can see that with 100% clarity. It's going to be really hard. I am going to cry. I am going to hurt. I am probably going to be begging myself for a little mercy, but in the end, it will be worth it. Besides, that mud might feel kind of nice after getting my ass burned so many times these last few weeks.....
These last few weeks have been one pit of hell after another. As soon as I stand on my own feet, hands and nails scratched and torn from the fight, I fall into another one. I am not a quitter, so I bandage, fall, and repeat with every pit I stumble into, but there are days where I feel like I'm in the Fire Swamps. Some days I don't know if I am going to fall into another fiery pit or just get eaten alive by a nasty big rat. Those are the days where it is always something.
My kid has something in her brain. Sure, it is supposed to be harmless, but what it really is supposed to be, is NOT THERE! The neurologist has calmly told me several times that she is just a walking puzzle and that if she could diagnose my daughter as such, she would. The school is now REFUSING to test either child for an IEP. We didn't even get out the door with that one. We met with the county psychiatrist for intake, they talked with me (my children's teacher) for maybe an hour, and back to his stupid cubicle he went. He went over grades and state scores. He looked and saw that in two weeks, it would be three years since the last request to test. He then typed up a nice little letter and sent it to me, refusing testing based on their academic scoring. Wow! I have never seen someone discriminated for their intelligence. It's new. I'm adjusting (while loading my proverbial guns). Apparently, only children who don't academically hit the "smart marker" are considered.
It was noted that they spoke to my daughter's teacher and that she stated there were no problems she sees. I was certain I was homeschooling, but maybe that is in that other reality. I'm not sure. It was also noted that her previous testing for IEP (done in her "bonus year" of kindergarten, after they dropped her IEP illegally) was just fine, so she is doing well. So, basically, the test they administered for her on a beginning kindergarten level, after a year of preschool and a previous year of kindergarten, were just fine. Her grades until now have been on standards. Her state test scores are averaging above average (Even if her writing skills are below the 50th percentile, she can READ! YAY!). They are walking a line with me on this one. All I have to do is request in two weeks and they MUST test her. Waiting was not their smartest idea, as I have already set an advocate meeting in motion. Obviously, my daughter stating that her pencil writes something different than what is in her head is not a problem. According to the district, it is NORMAL. So, following that line of logic, it is normal for her to have so much anxiety at the THOUGHT of writing that her heart races and tears form. The fact that she is 3 weeks behind in Literature because of this is normal. Oh, also, did you know that it is perfectly fine for a parent to transcribe for a child in school without an IEP? I did not. (It's not. I just love that they tried to tell me it is.) This is just her.
I got the same letter for my son. His was almost better. They sited the same reasoning, but also said that he does not engage in behaviors that hinder his or others' studies. So, it was someone else's kid that stole a laptop from school the day he was unmedicated? Good to know! It was noted that "he got a D in math last year for missing assignments, but it should be noted that he was a 6th grader in an 8th grade algebra class." What it really should be noted, is that the same student, is now a 7th grader in a 9th grade geometry class getting an A. So, the idea that he doesn't need help with executive functioning is just my imagination. Interesting. I guess the fact that I can access his work from home and ride his ass is good enough. He doesn't need help to learn how to do things on his own. As far as speech goes, they "don't give children speech services for pragmatics." Really? That is funny, I could swear the IEP he had when he came into the state was almost exclusively FOR pragmatics. Are we looking at the same paper? I do not think you see, what I think you are seeing.
I am in the process of throwing this all back in their faces. I do have an appointment with an advocate coming up in two weeks. As a matter of fact, I have a lot of appointments in the next two weeks. I meet Monday to deal with my own personal demons, which are actually starting to attack, being that it is Friday night. My daughter has a sleep study in two weeks. Both kids go to the psychiatrist for the big bad med shuffle the first week of October. The neurologist called to confirm a referral for the surgeon (just in case) and to tell me that my daughter has now been put at the TOP of the busy neuropsych's scheduling list. They also confirmed an overnight EEG next month. I have more appointments than I am honestly ready to take on. I have more fights than I am ready for. Be patient. NO! I have called all these people various times, due to being patient long enough. Those are my children. I am done waiting for them to do something, so I forced the issue. Accept. NO! I refuse to accept that you know who my kids are or what they do and do not need based on scanning some pieces of paper. No behavioral issues?!?! Would you like a list? I have one for both home and school.
I think the thing that pushed me to the point of seeking out the advocate before the letter was the ease of which that man dropped the letters A D H D. My children are well controlled on their medications. I mean, if they can guarantee they won't be expelled or fail all their classes, I would be happy to take them off their medication for a week and let them observe, but they can't. Then, when the letter reached me and my son's was all about no detrimental behavior, that was it. They used the term "stealing" on a county document, instead of the correct diagnosed term for what my son deals with, compulsion. This is gonna get ugly folks. My life is about to slip into the mud, and you know what, I don't mind.
Yeah, it's scary to look forward and see the piles of shit you have to wade through to get to that point you need to be. I'm terrified. Some nights I shake so hard, from the stress of it all. I am still trying to figure out how they switched me at birth, but I am not built or equipped to be the person I was raised to be. I cannot be patient when it is my or my children's livelihood at stake. I refuse to accept second best for me or them. I can't do it. So, yeah, I'm about to get a little dirty. Ok, so I am about to get a LOT dirty, but it is of my choosing and design. I can't name the times that I have stated that my life starts here. However, maybe I am using that term as a way to say, "I choose this path. I choose the hard path because it is the right one."
That is what I am doing again. This is another crossroads in my life. I can be patient and hope that everything turns out ok. I could except the outcome and go with the system, but I won't. I CHOOSE this path full of potholes, dirt, fights, and personal anguish. I CHOOSE it. It is the right path. I can see that with 100% clarity. It's going to be really hard. I am going to cry. I am going to hurt. I am probably going to be begging myself for a little mercy, but in the end, it will be worth it. Besides, that mud might feel kind of nice after getting my ass burned so many times these last few weeks.....
Sunday, September 8, 2013
Making the Hard Choices Isn't Easy....
As humans, we deal with stress, almost daily. As special needs parents, we deal with more on top of that. As me, I am dealing with more than I have ever shouldered before. I have been told in the past, on a good day, that I deal with enough stress to kill a "normal" person. I have been told by this person or that one, that someday, it will kill me. Some days, it feels like that. Sometimes, I go for days without sleeping. This time, I believe I can officially say that I have outdone myself. I find myself in a world I don't recognize. It isn't anything I can't particularly handle, but it is far more than I have ever tried to handle before. The irony of this, is that it came about by doing the right and strong thing.
I stood up this week and said, "Enough is enough." I made moves I have avoided for years. I faced the reality that I had to face reality. I won't go into detail, but suffice to say, I did what had to be done. I started something in motion that needed to get rolling. I know that it needed to be done. I know that it is something that, as it rolls progressively forward, is just going to get harder. However, it had to be done. I had to do something.
I have had this fire building in me for some time. The fire of anxiety and panic. That ignition when fear meets necessity is a very scary place to be. For months, the fears have gotten stronger. The anxiety has increased in frequency. Things I dreaded at the moment they were happening, have been extended to days, even weeks before, but never to this extent.
I can't sleep. I can't eat. I am living in a constant state of fear. My body is almost constantly burning in that cold fire that means I am on the verge of a panic attack. Nothing is working to keep me calm anymore. I feel like I cannot even relax for a few hours. I feel like I am dragging everyone into these pits of hell with me and I can't stop it. I try to back off. I try to not talk about it, but it's all I think about; this oncoming storm. This storm that I know is coming. The one that I put into motion.
Do not get me wrong. I needed to do what I did. It was absolutely necessary for me to move forward and heal, but dammit it is scary. I am one to shoulder the weight of everything that I possibly can, but when I can readily admit to myself that enough is enough, it's a sort of breaking point. I KNOW I need help. I am seeking it and will be getting it, but I am not sure it will come fast enough. I will make some calls Monday to see if I can get the help I need faster, but I am afraid of the escalation rate that is going on. I can't live in this constant fear and anxiety. It's a situation that, honestly, nobody can help me with. It is my own path that I need to take.
Being strong has always been my strong suit. I cannot remember a time where I was not strong when I needed to be. This is a first for me. I feel very vulnerable and weak. I am not used to that. I learned the hard way, a long time ago, that being strong has it's consequences. They pale in comparison to the absolute benefits of doing the right thing. Making the hard choices, are just that, hard. Life wasn't made to be a cake walk and I know that. It's the fear that you made it at all, that makes it hard. When you are me, you have spent your whole life fighting everyone's else's criticism. You question your every move. Even when you step back and look objectively, which I can do, and see that it is the right choice, your head still wonders.
I know that in the light of the tragedy that happened this week, that this may raise red flags, but please don't let it. I write to get it out. In a way, it is just another way to deal with the anxiety and panic that is raging through me. I made the right choice. Yes, I am summoning a storm, probably worse than I have ever seen. Yes, I am looking into the future and I am scared, but I am not alone. I have a support group that I love and a family that does their best to hold me together. However, if I fly apart at the seams for awhile, don't be surprised. Yes, I am afraid. I am a walking panic attack full of fear. I am having trouble with functioning and answering questions. Truth is, I am stronger than this fear. I may not feel that way, but I am. It's just another lesson learned in life. Making the hard choices comes with both good and bad. I am just currently experiencing the bad.
I stood up this week and said, "Enough is enough." I made moves I have avoided for years. I faced the reality that I had to face reality. I won't go into detail, but suffice to say, I did what had to be done. I started something in motion that needed to get rolling. I know that it needed to be done. I know that it is something that, as it rolls progressively forward, is just going to get harder. However, it had to be done. I had to do something.
I have had this fire building in me for some time. The fire of anxiety and panic. That ignition when fear meets necessity is a very scary place to be. For months, the fears have gotten stronger. The anxiety has increased in frequency. Things I dreaded at the moment they were happening, have been extended to days, even weeks before, but never to this extent.
I can't sleep. I can't eat. I am living in a constant state of fear. My body is almost constantly burning in that cold fire that means I am on the verge of a panic attack. Nothing is working to keep me calm anymore. I feel like I cannot even relax for a few hours. I feel like I am dragging everyone into these pits of hell with me and I can't stop it. I try to back off. I try to not talk about it, but it's all I think about; this oncoming storm. This storm that I know is coming. The one that I put into motion.
Do not get me wrong. I needed to do what I did. It was absolutely necessary for me to move forward and heal, but dammit it is scary. I am one to shoulder the weight of everything that I possibly can, but when I can readily admit to myself that enough is enough, it's a sort of breaking point. I KNOW I need help. I am seeking it and will be getting it, but I am not sure it will come fast enough. I will make some calls Monday to see if I can get the help I need faster, but I am afraid of the escalation rate that is going on. I can't live in this constant fear and anxiety. It's a situation that, honestly, nobody can help me with. It is my own path that I need to take.
Being strong has always been my strong suit. I cannot remember a time where I was not strong when I needed to be. This is a first for me. I feel very vulnerable and weak. I am not used to that. I learned the hard way, a long time ago, that being strong has it's consequences. They pale in comparison to the absolute benefits of doing the right thing. Making the hard choices, are just that, hard. Life wasn't made to be a cake walk and I know that. It's the fear that you made it at all, that makes it hard. When you are me, you have spent your whole life fighting everyone's else's criticism. You question your every move. Even when you step back and look objectively, which I can do, and see that it is the right choice, your head still wonders.
I know that in the light of the tragedy that happened this week, that this may raise red flags, but please don't let it. I write to get it out. In a way, it is just another way to deal with the anxiety and panic that is raging through me. I made the right choice. Yes, I am summoning a storm, probably worse than I have ever seen. Yes, I am looking into the future and I am scared, but I am not alone. I have a support group that I love and a family that does their best to hold me together. However, if I fly apart at the seams for awhile, don't be surprised. Yes, I am afraid. I am a walking panic attack full of fear. I am having trouble with functioning and answering questions. Truth is, I am stronger than this fear. I may not feel that way, but I am. It's just another lesson learned in life. Making the hard choices comes with both good and bad. I am just currently experiencing the bad.
Tuesday, September 3, 2013
Do this for me....
I have been sitting here crying for 4 hours on and off. The ugly kind, where there is no stopping it and snot is dripping out of your nose. Yeah, that one. Why, you may ask? Take your damn pick. These last two weeks have been very hard on our family. We spent last week dealing with getting JJ started on an IEP and BIP, which we didn't want to do, but became necessary. I spent all last week running around and getting it all together. I never really got a chance to de-stress. It was one thing after another. I was making hard and fast decisions and it took it's toll. I thought that, just maybe, this week I could relax and not worry about anything for like an hour. I was so wrong.
Today has been the day from hell, literally. Every plan made fell through. I did call the DV group and schedule an appointment, the insurance to see what protocols were in place for iPad coverage, and the local autism support center to try to find an advocate for my daughter due to the county breaking FAPE laws in 2009. That was about as far as I got. I was supposed to teach math lessons, but I needed to wait until after I dropped off the borrowed car. I needed to write up a formal request for an IEP for my daughter. This last one is so important because the county has already showed how concerned they are about following laws and providing services for children that need them. I had all these plans and then it happened.
I was told that my grandmother is doing worse. She is having surgery next month that she may not make it out of, but even if she does, it's not long. Family feuds that have raged for years are being mended in preparation for this. It is that serious. Her prognosis isn't good at all. I was then made to feel terrible because my busy schedule has prevented me from even making a simple phone call to the woman who practically raised me. I haven't called or gone to see her in over a month. I live ten minutes down the road. Thing is, I don't dictate my life. It dictates me. I was told that even though I am going through hell, be it my own personal kind with dv or the kids, I was to be attentive to my mother. I was to understand HER feelings about it and how hard this is going to be for HER. Why is it that everyone forgets that when my grandmother, whom I see as my own mother in most ways, dies, my daughter's ashes go with her?
Yeah, I don't just have the horrid reality of losing a woman that I swore I couldn't live without when I was a teen, I have to say a final goodbye to my first daughter. Not an easy thing to do. I get that everyone is upset and they are all entitled to their stress. My mother was right. I would be pissed if someone hadn't told me, but it could not have come at a more horrible time. I feel like I can't breathe. I feel horrible that I haven't been able to go see her or take my children to see her. I feel terrible that I am so afraid of my damned ex that I unhooked my home phone, disabling her ability to call me. I feel so bad, guilty, sad, and just hurt all at once.
Then, I had to tell my son. I know my son does not do well with goodbyes and I knew that surprising him with information after the fact would not be the way to go. So, I had to sit my 12 year old son down and explain that his great grandmother was not going to be around much longer. The boy who never cries, started crying. I explained that she had lived a very long life and that it was nearly time for her to go. I told him I did not want him to be surprised by it. I promised that I would try to get him over there as often and soon as possible. I HATED telling him that. This is his P grandma. She means the world to him. He used to cuddle up in her arms when he was two, when he wouldn't with anyone else.
This woman is a wonder. She is amazing and has been so much of my life. I feel like I am losing my compass. The one person who I could be honest with. Even if she didn't quite agree with me on things, she understood. me. The woman who evolved so much in a life time that it would be near impossible to find anyone so open and real in this world. My family doesn't get that. They don't see it. They don't see her. They see a frail woman who is struggling to live, but they don't see who she is. They don't see what she means or how she affects those around her. My family is totally missing the best part of who she is, and they will not mourn her the way she would like because, they don't know her.
As I am crying over this, I totally dissed the math, which I am sure I will hear about tomorrow. I am off and on crying when I get an email from the county. What we felt was going to be an understanding setting for an IEP and BIP for my son, has been handed to the county offices. They are not nearly understanding and they have shown us once before how much they care about what special children need. The email was cold and left me tired. I am so tired of fighting. I then went to write my daughter's IEP request and found, that due to the stress, I cannot put her needs and difficulties with writing into cohesive sentences. It doesn't flow. I feel like I am failing my child. I feel like I am failing.
I am failing at being the granddaughter I should be. I am failing my children by not being able to put into words the struggles they go through, even if it means they need help. I am just failing. I am failing and falling. I see the pits I am headed towards and I cannot stop the decent. Everything would be fine if they could tell me that my grandmother will be fine, but they can't. So, I am staring down the tunnel, into the darkness filled with IEP fights, funerals, court battles, facing my own dv trauma, and there is not a place of peace in sight.
I will find my way again, I am sure. However, right now, I am lost. I am lost without the lifeline that is my grandmother. The light, goodness, and pure honesty she brings to my life is not something I am prepared to live without. The one family member I would call a true ally is going to be gone soon. The last two pieces that ties me to where I am are leaving this earth. No, I cannot think. I cannot answer questions. For the moment, I am immobilized by grief of what is to come. I am tearing apart from the inside as the person that balances my life and gave it meaning when I was so young, is getting ready to be ripped from me.
So, from my readers, I ask this. Due to my family's inability to truly see what is leaving this world, will you say a prayer or send good thoughts. Will you keep my grandmother in your hearts as she is, not who they see her to be? Will you remember her the way I see her, so that if I ever find myself forgetting, someone can remind me that this woman raised me? She is the reason for who I am. She formed and shaped me into the mother and wife I have become. She taught me the important lessons in life. She taught me self respect and love. She taught me the meaning of strength and how to be strong for myself and my children. Do this for me, please, because the world should know who and what they are about to lose: a soul that shines so bright, it cannot help but imprint everyone around them. She is a soul that impacts every life she comes into contact with. She is a soul that is very loved and will never be forgotten.
Today has been the day from hell, literally. Every plan made fell through. I did call the DV group and schedule an appointment, the insurance to see what protocols were in place for iPad coverage, and the local autism support center to try to find an advocate for my daughter due to the county breaking FAPE laws in 2009. That was about as far as I got. I was supposed to teach math lessons, but I needed to wait until after I dropped off the borrowed car. I needed to write up a formal request for an IEP for my daughter. This last one is so important because the county has already showed how concerned they are about following laws and providing services for children that need them. I had all these plans and then it happened.
I was told that my grandmother is doing worse. She is having surgery next month that she may not make it out of, but even if she does, it's not long. Family feuds that have raged for years are being mended in preparation for this. It is that serious. Her prognosis isn't good at all. I was then made to feel terrible because my busy schedule has prevented me from even making a simple phone call to the woman who practically raised me. I haven't called or gone to see her in over a month. I live ten minutes down the road. Thing is, I don't dictate my life. It dictates me. I was told that even though I am going through hell, be it my own personal kind with dv or the kids, I was to be attentive to my mother. I was to understand HER feelings about it and how hard this is going to be for HER. Why is it that everyone forgets that when my grandmother, whom I see as my own mother in most ways, dies, my daughter's ashes go with her?
Yeah, I don't just have the horrid reality of losing a woman that I swore I couldn't live without when I was a teen, I have to say a final goodbye to my first daughter. Not an easy thing to do. I get that everyone is upset and they are all entitled to their stress. My mother was right. I would be pissed if someone hadn't told me, but it could not have come at a more horrible time. I feel like I can't breathe. I feel horrible that I haven't been able to go see her or take my children to see her. I feel terrible that I am so afraid of my damned ex that I unhooked my home phone, disabling her ability to call me. I feel so bad, guilty, sad, and just hurt all at once.
Then, I had to tell my son. I know my son does not do well with goodbyes and I knew that surprising him with information after the fact would not be the way to go. So, I had to sit my 12 year old son down and explain that his great grandmother was not going to be around much longer. The boy who never cries, started crying. I explained that she had lived a very long life and that it was nearly time for her to go. I told him I did not want him to be surprised by it. I promised that I would try to get him over there as often and soon as possible. I HATED telling him that. This is his P grandma. She means the world to him. He used to cuddle up in her arms when he was two, when he wouldn't with anyone else.
This woman is a wonder. She is amazing and has been so much of my life. I feel like I am losing my compass. The one person who I could be honest with. Even if she didn't quite agree with me on things, she understood. me. The woman who evolved so much in a life time that it would be near impossible to find anyone so open and real in this world. My family doesn't get that. They don't see it. They don't see her. They see a frail woman who is struggling to live, but they don't see who she is. They don't see what she means or how she affects those around her. My family is totally missing the best part of who she is, and they will not mourn her the way she would like because, they don't know her.
As I am crying over this, I totally dissed the math, which I am sure I will hear about tomorrow. I am off and on crying when I get an email from the county. What we felt was going to be an understanding setting for an IEP and BIP for my son, has been handed to the county offices. They are not nearly understanding and they have shown us once before how much they care about what special children need. The email was cold and left me tired. I am so tired of fighting. I then went to write my daughter's IEP request and found, that due to the stress, I cannot put her needs and difficulties with writing into cohesive sentences. It doesn't flow. I feel like I am failing my child. I feel like I am failing.
I am failing at being the granddaughter I should be. I am failing my children by not being able to put into words the struggles they go through, even if it means they need help. I am just failing. I am failing and falling. I see the pits I am headed towards and I cannot stop the decent. Everything would be fine if they could tell me that my grandmother will be fine, but they can't. So, I am staring down the tunnel, into the darkness filled with IEP fights, funerals, court battles, facing my own dv trauma, and there is not a place of peace in sight.
I will find my way again, I am sure. However, right now, I am lost. I am lost without the lifeline that is my grandmother. The light, goodness, and pure honesty she brings to my life is not something I am prepared to live without. The one family member I would call a true ally is going to be gone soon. The last two pieces that ties me to where I am are leaving this earth. No, I cannot think. I cannot answer questions. For the moment, I am immobilized by grief of what is to come. I am tearing apart from the inside as the person that balances my life and gave it meaning when I was so young, is getting ready to be ripped from me.
So, from my readers, I ask this. Due to my family's inability to truly see what is leaving this world, will you say a prayer or send good thoughts. Will you keep my grandmother in your hearts as she is, not who they see her to be? Will you remember her the way I see her, so that if I ever find myself forgetting, someone can remind me that this woman raised me? She is the reason for who I am. She formed and shaped me into the mother and wife I have become. She taught me the important lessons in life. She taught me self respect and love. She taught me the meaning of strength and how to be strong for myself and my children. Do this for me, please, because the world should know who and what they are about to lose: a soul that shines so bright, it cannot help but imprint everyone around them. She is a soul that impacts every life she comes into contact with. She is a soul that is very loved and will never be forgotten.
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