This will be my fourth year celebrating Christmas without my family. And that sucks. It's actually been so long now that I really don't remember what it was like to be with my brothers and parents. It's weird how we've all grown up... My parents are spending Christmas Eve down in St. James with my Grandparents, Aaron is (I believe) spending it with his wonderful girlfriend Abbie's family, and my baby brother Matty is hunkered down somewhere in Afghanistan. Matty definitely has the worst deal of all. And I feel bad. I miss him so much. But thankfully he will be home *hopefully* early February and then come August, he'll be getting stationed at the Army base across the island from us- how lucky are we??
This is the first year we're going to be spending Christmas just the four of us. Jack's first Christmas Jacob's brother Jared was living with us, and last year and the year before Jacob's mom was living with us. Don't get me wrong, I love my in-laws dearly, but it's just not the same as having MY family here.
I have to admit, it's probably better this way. Jack's pretty edgy these days. He's been out of school for exactly a week today, and it's starting to show. I hate how changes in his schedule really mess everything up. And there's nothing we can do about it. Such is life. Tonight I'm going to sit down and make up a picture schedule for tomorrow morning to try to help Jack through the chaos. It'll be interesting to see how he handles it all. We're just crossing our fingers for no major melt-downs... I'm sure there will be some crying and screaming but if we don't have any HUGE tantrums, it will be a success. We're going to cross our fingers and hope between the picture schedule, lots of sensory, and lots of deep breaths (on my part of course!) we'll all survive :)
Merry Christmas!!
Friday, December 24, 2010
Monday, December 20, 2010
Life
I have such a heavy heart today. I knew it was coming. After all, today is the 20th, a day that will forever stand out in my heart...
Two months ago today, October 20, I had a miscarriage. It feels so wrong to even type those words. I guess it was naive of me to think that I wouldn't ever suffer a loss of a child. And quite frankly that isn't even true. It's my biggest fear. But I honestly didn't imagine I would ever have a miscarriage, literally no one in my entire family has had one, or so they say. Surely that would mean that I should be in the clear. And after having such a difficult pregnancy with Jack I guess I kinda thought my body was super tough or something. But oh was I wrong.
I had no idea I was pregnant. We have been trying to get pregnant again for nearly a year with no success. Once we came to September and I knew I was going to be having surgery on my foot the end of the month we were actually trying NOT to get pregnant. Ironically, that is exactly when we did. And with that comes all sorts of feelings of guilt. I should have known. I had a pregnancy test shortly before my surgery but it came back negative. I guess I wasn't pregnant enough yet? That whole thing is a mystery to me. But I was. It really is no wonder that we lost the baby, I had surgery on my foot and I was put under for it, then was on pretty heavy pain killers for a couple weeks after that. Everyone kept telling me that heavy pain meds can mess with your cycle so not to worry about my period being late... Which was exactly why I never thought I was pregnant. But I should have known...
It all happened so fast. I had no idea what was happening. My parents were here. It was awful. Even after it happened I wasn't sure that THAT was what happened. So I called the hospital and after hours of waiting finally spoke to a nurse who told me just to take a pregnancy test and come in the next morning. That is when it became real. Those two lines I had been waiting for the last year were the exact thing I feared seeing more than anything. And there they were. Glaring at me. And that is when reality hit. I have no idea how I managed to tell my parents I had to go pick Jacob up from work, I have no idea how I drove to Jacob's work, but I'll never forget the moment he got in the car. Our lives were forever changed.
The months since I've been a zombie. Trying to maintain consciousness when all I want to do is cry. Trying to pretend like everything is ok when it's anything but. Holding my boys so tight and trying to find a way to hide my sobbing because I'm so thankful for them yet so broken that I have a baby in heaven who we'll never meet on this Earth. A little brother or sister that I know they would have loved to pieces. A missing piece in our life. Forever.
And now it's Christmas. And although it's supposed to be a joyous time I can't help but feel there is a rain cloud above me always. Ironically, I got pregnant with this baby the exact same time I got pregnant with each of the boys. They were born June 7th and 10th and my due date for this baby would have been around the 9th or so. So I can't help but remember... remember what the Christmas' were like when I was pregnant with them and long to be pregnant right now...
After the miscarriage we spoke with our Priest and his wife and they suggested that we name the baby. Something I hadn't ever thought to do but seemed so right. Since I wasn't nearly far enough along to tell if we would have had a boy or a girl we thought about using a unisex name (seems silly in hindsight but we did). But nothing felt right. And when we were on our way to Church one evening Jacob suggested we use the name Zoe which means "life" in Greek. We can't ever find out if we would have had a boy or a girl but one thing is for sure and that is that we had a life, another child, our child. And so that is the name we decided on. Our little Zoe.
I'm still drowning in this all. Hopefully I will find some peace, preferably sooner than later. But for now I'm just going to keep doing the only thing I know to do, and that's just keep breathing.
Two months ago today, October 20, I had a miscarriage. It feels so wrong to even type those words. I guess it was naive of me to think that I wouldn't ever suffer a loss of a child. And quite frankly that isn't even true. It's my biggest fear. But I honestly didn't imagine I would ever have a miscarriage, literally no one in my entire family has had one, or so they say. Surely that would mean that I should be in the clear. And after having such a difficult pregnancy with Jack I guess I kinda thought my body was super tough or something. But oh was I wrong.
I had no idea I was pregnant. We have been trying to get pregnant again for nearly a year with no success. Once we came to September and I knew I was going to be having surgery on my foot the end of the month we were actually trying NOT to get pregnant. Ironically, that is exactly when we did. And with that comes all sorts of feelings of guilt. I should have known. I had a pregnancy test shortly before my surgery but it came back negative. I guess I wasn't pregnant enough yet? That whole thing is a mystery to me. But I was. It really is no wonder that we lost the baby, I had surgery on my foot and I was put under for it, then was on pretty heavy pain killers for a couple weeks after that. Everyone kept telling me that heavy pain meds can mess with your cycle so not to worry about my period being late... Which was exactly why I never thought I was pregnant. But I should have known...
It all happened so fast. I had no idea what was happening. My parents were here. It was awful. Even after it happened I wasn't sure that THAT was what happened. So I called the hospital and after hours of waiting finally spoke to a nurse who told me just to take a pregnancy test and come in the next morning. That is when it became real. Those two lines I had been waiting for the last year were the exact thing I feared seeing more than anything. And there they were. Glaring at me. And that is when reality hit. I have no idea how I managed to tell my parents I had to go pick Jacob up from work, I have no idea how I drove to Jacob's work, but I'll never forget the moment he got in the car. Our lives were forever changed.
The months since I've been a zombie. Trying to maintain consciousness when all I want to do is cry. Trying to pretend like everything is ok when it's anything but. Holding my boys so tight and trying to find a way to hide my sobbing because I'm so thankful for them yet so broken that I have a baby in heaven who we'll never meet on this Earth. A little brother or sister that I know they would have loved to pieces. A missing piece in our life. Forever.
And now it's Christmas. And although it's supposed to be a joyous time I can't help but feel there is a rain cloud above me always. Ironically, I got pregnant with this baby the exact same time I got pregnant with each of the boys. They were born June 7th and 10th and my due date for this baby would have been around the 9th or so. So I can't help but remember... remember what the Christmas' were like when I was pregnant with them and long to be pregnant right now...
After the miscarriage we spoke with our Priest and his wife and they suggested that we name the baby. Something I hadn't ever thought to do but seemed so right. Since I wasn't nearly far enough along to tell if we would have had a boy or a girl we thought about using a unisex name (seems silly in hindsight but we did). But nothing felt right. And when we were on our way to Church one evening Jacob suggested we use the name Zoe which means "life" in Greek. We can't ever find out if we would have had a boy or a girl but one thing is for sure and that is that we had a life, another child, our child. And so that is the name we decided on. Our little Zoe.
I'm still drowning in this all. Hopefully I will find some peace, preferably sooner than later. But for now I'm just going to keep doing the only thing I know to do, and that's just keep breathing.
Tuesday, December 14, 2010
When will they get it?
Yet another meeting at the school yesterday. Something I was dreading. Not only am I so over this I had to go by myself because there was no one to watch the munchkins so Jacob stayed home with them.
It was myself, Jack's teacher (we'll call her Mrs. M), the autism consultant, and a counselor of some sort. Right from the start I knew it was going to be rough after the counselor asking us what Jack's strengths were and Mrs. M had nothing to offer. Ummm he's been in your class for 5 months now, give us at least one strength! Really?!
We then worked our way into "problem behaviors." It took every ounce of strength I possess to not scream and/or cry at this point. It is SO hard to sit and listen to someone rag on your kid, saying that he's the "problem" in the classroom, that he doesn't know things that I know damn well he does. Each sentence was a blow to the stomach and they just kept coming. "Jackson can't/won't/doesn't do anything." Over and over and over again.
Many of Jack's "problem behaviors" in school come from them not doing their job. Many of these problems we don't have at home because we're doing what we should be doing and the expectations and the environment is appropriate. Specifically his sensory issues. We do sensory activities every 20 minutes to keep him calm cool and collected at home. No matter how many times I've told them this they're still only doing it TWICE a day. Yup, twice in SIX hours! No wonder why he can't focus and do what they want of him! I swear to you, Mrs. M actually brought up the fact that Jack has a hard time transitioning into music time... now music time is immediately after recess. So if you were running around in the sun and 80 degree weather for 30 minutes you'd probably have a hard time sitting down and singing too. I know I would! Transitions have always been a struggle for Jack. But to expect him to transition from a running/active activity to a structured sitting activity with no help whatsoever is unreasonable. Autism aside, he's THREE.
The list goes on and on and on. So many of these problems would be minimized if they would just implement and use the suggestions that myself, the autism consultant, and the occupational therapist have provided, but they don't. Why you ask? Because for one the teacher is obviously completely overwhelmed with 9 special ed kids to herself and one untrained education assistant who's been there for a month and a brand new one who started yesterday (and is only temporary, they're *hoping* to have a regular person hired by after break). It's all a complete and utter joke. I get it, I get that she's tired and overwhelmed but that's no excuse to just dismiss my child as a "problem" and refuse to try to make school work for him.
Is this really what we have to look forward to for the next 13 years? I don't know that I can do this. The whole situation is entirely unhealthy and unproductive for myself and my child.
So at this point we're waiting for 2.5 weeks until after Christmas break to do the next meeting. The most frustrating part is knowing that fall break was what started this spiral. And we're going to do it all over again, only longer, for Christmas. Chances are we will come back after break and everything will once again be different and we'll be walking deep into yet another regression and starting over at square one. UGH.
And to top it off, Jack takes his favorite blanket, Gumby, to school with him now because he refuses to nap without it. I didn't want to start doing this because I knew it would be an issue. Last Wednesday Gumby didn't make it home, got left at school, and we had to go get it quick before the school closed. Well yesterday I was at the meeting when Jack got home and Jacob apparently didn't know to check for it. It was 5 o'clock by the time I realized it was missing and Jack was HEARTBROKEN. We had a terrible, terrible, terrible night last night. All because the school just simply can't pull their act together. I understand mistakes, I truly do, but twice in less than a week? Come on now! How hard is it to put a blanket in his backpack, you take it out of there every morning, put it back where you found it dang-it! I taped a gigantic fluorescent green note to the front of Jack's communication log last night reminding them about Gumby coming home each night... There's no way they can forget now (I hope)!
On the other side of my pity party coin is the fact that this morning was the first time I've seen my husband in days basically. He began working on a project last Thursday for some of the high ups on the base creating a "booklet" on some random military crap. He got home from work at 8 Friday night, worked all afternoon Saturday, went into work Sunday night at 7 and didn't get home til 7 am Monday morning, slept for a couple hours and was back there from 11-11 yesterday (aside from the hour he was home watching the kids but that didn't really count because we basically said hello as we ran past each other to the car/house). So this booklet is like 200 pages, hand-drawn on the computer by my husband. That's not a booklet, that's a novel. Wanna know the best part? This morning one of his marines ran over a copy of it to one of the guys Jacob's making this for and guess what he said?! "This isn't at all what we wanted!" They're looking for like a 30 page document. With no pictures (we're talking hours of hunting for the images he put in that thing). So basically the project that stole my husband was a bust. And now he'll probably be at work late again tonight redoing the whole damn thing. FrUsTrAtInG (more so for Jacob obviously but I seriously hate not getting to see him for days at a time and having to do everything around the house and with the kids 100% by myself for days on end. It's so exhausting!).
Well I guess that's the end of yesterday and today's sob story. I just wish I could snap my fingers and fix everything...
It was myself, Jack's teacher (we'll call her Mrs. M), the autism consultant, and a counselor of some sort. Right from the start I knew it was going to be rough after the counselor asking us what Jack's strengths were and Mrs. M had nothing to offer. Ummm he's been in your class for 5 months now, give us at least one strength! Really?!
We then worked our way into "problem behaviors." It took every ounce of strength I possess to not scream and/or cry at this point. It is SO hard to sit and listen to someone rag on your kid, saying that he's the "problem" in the classroom, that he doesn't know things that I know damn well he does. Each sentence was a blow to the stomach and they just kept coming. "Jackson can't/won't/doesn't do anything." Over and over and over again.
Many of Jack's "problem behaviors" in school come from them not doing their job. Many of these problems we don't have at home because we're doing what we should be doing and the expectations and the environment is appropriate. Specifically his sensory issues. We do sensory activities every 20 minutes to keep him calm cool and collected at home. No matter how many times I've told them this they're still only doing it TWICE a day. Yup, twice in SIX hours! No wonder why he can't focus and do what they want of him! I swear to you, Mrs. M actually brought up the fact that Jack has a hard time transitioning into music time... now music time is immediately after recess. So if you were running around in the sun and 80 degree weather for 30 minutes you'd probably have a hard time sitting down and singing too. I know I would! Transitions have always been a struggle for Jack. But to expect him to transition from a running/active activity to a structured sitting activity with no help whatsoever is unreasonable. Autism aside, he's THREE.
The list goes on and on and on. So many of these problems would be minimized if they would just implement and use the suggestions that myself, the autism consultant, and the occupational therapist have provided, but they don't. Why you ask? Because for one the teacher is obviously completely overwhelmed with 9 special ed kids to herself and one untrained education assistant who's been there for a month and a brand new one who started yesterday (and is only temporary, they're *hoping* to have a regular person hired by after break). It's all a complete and utter joke. I get it, I get that she's tired and overwhelmed but that's no excuse to just dismiss my child as a "problem" and refuse to try to make school work for him.
Is this really what we have to look forward to for the next 13 years? I don't know that I can do this. The whole situation is entirely unhealthy and unproductive for myself and my child.
So at this point we're waiting for 2.5 weeks until after Christmas break to do the next meeting. The most frustrating part is knowing that fall break was what started this spiral. And we're going to do it all over again, only longer, for Christmas. Chances are we will come back after break and everything will once again be different and we'll be walking deep into yet another regression and starting over at square one. UGH.
And to top it off, Jack takes his favorite blanket, Gumby, to school with him now because he refuses to nap without it. I didn't want to start doing this because I knew it would be an issue. Last Wednesday Gumby didn't make it home, got left at school, and we had to go get it quick before the school closed. Well yesterday I was at the meeting when Jack got home and Jacob apparently didn't know to check for it. It was 5 o'clock by the time I realized it was missing and Jack was HEARTBROKEN. We had a terrible, terrible, terrible night last night. All because the school just simply can't pull their act together. I understand mistakes, I truly do, but twice in less than a week? Come on now! How hard is it to put a blanket in his backpack, you take it out of there every morning, put it back where you found it dang-it! I taped a gigantic fluorescent green note to the front of Jack's communication log last night reminding them about Gumby coming home each night... There's no way they can forget now (I hope)!
On the other side of my pity party coin is the fact that this morning was the first time I've seen my husband in days basically. He began working on a project last Thursday for some of the high ups on the base creating a "booklet" on some random military crap. He got home from work at 8 Friday night, worked all afternoon Saturday, went into work Sunday night at 7 and didn't get home til 7 am Monday morning, slept for a couple hours and was back there from 11-11 yesterday (aside from the hour he was home watching the kids but that didn't really count because we basically said hello as we ran past each other to the car/house). So this booklet is like 200 pages, hand-drawn on the computer by my husband. That's not a booklet, that's a novel. Wanna know the best part? This morning one of his marines ran over a copy of it to one of the guys Jacob's making this for and guess what he said?! "This isn't at all what we wanted!" They're looking for like a 30 page document. With no pictures (we're talking hours of hunting for the images he put in that thing). So basically the project that stole my husband was a bust. And now he'll probably be at work late again tonight redoing the whole damn thing. FrUsTrAtInG (more so for Jacob obviously but I seriously hate not getting to see him for days at a time and having to do everything around the house and with the kids 100% by myself for days on end. It's so exhausting!).
Well I guess that's the end of yesterday and today's sob story. I just wish I could snap my fingers and fix everything...
Wednesday, December 8, 2010
Love
I wanted to write this blog last night after our class at church when everything was still fresh but I just never managed to do it. So this is going to be kind of scattered, but we're gonna give it a go anyway.
Faith is an act of LOVE.
I find myself dwelling on this abstract word of "love" recently. I love good music. I love my friends. I love my family. I love sunny days with a breeze. No matter how much I love these things my love for them is nothing with out action. Doing something about it. Acting upon it. This is a lesson I see over and over again in my own life. The lack of action. This absolutely includes my love and relationship with God.
I do in fact love God. I swear I do. And I know God loves me, after all, He IS love. The Orthodox church defines sin as (basically) a personal movement away from God, an act of self-will. This is different than many other denominations I've encountered where sin is much more of a breaking of a rule(s). No matter how much I suck (which is quite a bit these days), no matter how much I fight Him, no matter how unwilling I am to do the right thing, none of that has any effect on God's love for me. WOW. Even though I feel millions of miles away from Him right now I can rest assured that it wasn't Him who moved, who changed, it was me. God's love doesn't waver... Ever.
Father Paul quoted a little bible passage last night (I believe from Revelation but I could be wrong) in which Christ says "I stand at the door and knock." I can hear it. It's interesting how although God works in mysterious ways and puts constant little reminders in my life (when I choose to see them) of His love but doesn't "force" Himself on me. He stands there, waiting. Faith is an act of love, a voluntary action, a virtue, a personal decision. So when am I going to act upon it? When is enough going to be enough? When will I start moving back towards God rather than spiraling away from Him? Sometimes I truly wish He would just force Himself on me, it would be SO much easier if I just had to do what I am supposed to do. To have a clear-cut, step by step, moment by moment instruction as to what exactly I am supposed to be doing and be pushed in that direction. But He doesn't work like that. And I can see why. God didn't create the Earth to have a bunch of zombie robots wandering around...
Ironically I know all these things, I truly do. I know it in my head but my heart, well, we're not there yet. I struggle so much with feelings of self-loathing, self-doubt... Why would God want ME? But I know He does.
I was on the playground with Liam and another little boy I babysat yesterday reading a yoga magazine. I typically don't read a whole lot of the articles because a lot of it is weird, new-agey spiritual gunk that I don't really put any stock in. But I started reading this article about how yoga "changes" a person. As I was reading it I found it all incredibly weird that these were things people attribute to yoga but I found that it really spoke to me about God. I had one of those "ah-ha" moments as Oprah would say. Coming to God is a transformational experience. But where I've been getting it wrong my entire life is in my hope that God would make me into a different person, a better person. The truth is, God doesn't change us into something we're not. He merely strips away all the junk and clutter in our lives to expose the person we are and always have been deep down inside. Who we really are. God loves me for me! The me that's hidden somewhere below the self-loathing, guilt, bitterness, and anger. Because He knows me. He loves me for me.
And that is profoundly beautiful.
Faith is an act of LOVE.
I find myself dwelling on this abstract word of "love" recently. I love good music. I love my friends. I love my family. I love sunny days with a breeze. No matter how much I love these things my love for them is nothing with out action. Doing something about it. Acting upon it. This is a lesson I see over and over again in my own life. The lack of action. This absolutely includes my love and relationship with God.
I do in fact love God. I swear I do. And I know God loves me, after all, He IS love. The Orthodox church defines sin as (basically) a personal movement away from God, an act of self-will. This is different than many other denominations I've encountered where sin is much more of a breaking of a rule(s). No matter how much I suck (which is quite a bit these days), no matter how much I fight Him, no matter how unwilling I am to do the right thing, none of that has any effect on God's love for me. WOW. Even though I feel millions of miles away from Him right now I can rest assured that it wasn't Him who moved, who changed, it was me. God's love doesn't waver... Ever.
Father Paul quoted a little bible passage last night (I believe from Revelation but I could be wrong) in which Christ says "I stand at the door and knock." I can hear it. It's interesting how although God works in mysterious ways and puts constant little reminders in my life (when I choose to see them) of His love but doesn't "force" Himself on me. He stands there, waiting. Faith is an act of love, a voluntary action, a virtue, a personal decision. So when am I going to act upon it? When is enough going to be enough? When will I start moving back towards God rather than spiraling away from Him? Sometimes I truly wish He would just force Himself on me, it would be SO much easier if I just had to do what I am supposed to do. To have a clear-cut, step by step, moment by moment instruction as to what exactly I am supposed to be doing and be pushed in that direction. But He doesn't work like that. And I can see why. God didn't create the Earth to have a bunch of zombie robots wandering around...
Ironically I know all these things, I truly do. I know it in my head but my heart, well, we're not there yet. I struggle so much with feelings of self-loathing, self-doubt... Why would God want ME? But I know He does.
I was on the playground with Liam and another little boy I babysat yesterday reading a yoga magazine. I typically don't read a whole lot of the articles because a lot of it is weird, new-agey spiritual gunk that I don't really put any stock in. But I started reading this article about how yoga "changes" a person. As I was reading it I found it all incredibly weird that these were things people attribute to yoga but I found that it really spoke to me about God. I had one of those "ah-ha" moments as Oprah would say. Coming to God is a transformational experience. But where I've been getting it wrong my entire life is in my hope that God would make me into a different person, a better person. The truth is, God doesn't change us into something we're not. He merely strips away all the junk and clutter in our lives to expose the person we are and always have been deep down inside. Who we really are. God loves me for me! The me that's hidden somewhere below the self-loathing, guilt, bitterness, and anger. Because He knows me. He loves me for me.
And that is profoundly beautiful.
Sunday, December 5, 2010
What if I just can't do this?
I'm so tired. So tired. Complete and utter exhaustion. My house is a wreck (which is so much worse than usual with chaos amidst Christmas decorations). And this weekend has been terrible. Can I get a break? Just for awhile?
We've been really slacking on a lot of things we had once been so good at. We rarely sit down and eat meals together since Jacob's work schedule is so insane. When we were at Jack's meeting Friday they asked what his eating habits were at home... Insert complete embarrassment. With things being so nuts I really just let him pick whatever he wants and if he refuses to sit at the table I don't push it. It's just not worth the battles these days. And with him being so insanely picky these days I'm really just glad he's eating. Well, this is probably NOT helping the issue of eating lunch at school. My bad. Three year olds just don't understand that things aren't always the same at home and school. So being able to eat whatever, whenever at home is really (more than likely) making lunch time a horrible task for him at school. Ugh. Now we must start regulating home eating yet again. Something we should do anyway, after all, it is the right thing to do. But it's hard... And I just don't want to do it gosh darn it!
We used to take the boys out on at least one outing per weekend. We really haven't been able to do it lately because Jacob's schedule is INSANE and after last weekend's incident I definitely am not doing it myself. But we should, neither of the boys are going to learn to control themselves in public if they never are. Liam's excellent, but it's because I take him out with me whenever I run errands during the week while Jack's at school. But when the boys get together it's just chaos. Yesterday we tried to take the boys to the Christmas parade in the town next to us. We of course got going late (I was surprisingly on the ball and had everything ready to go and in the car LONG before we left, but a certain someone wouldn't get off the couch and get in the dang shower). I figured we should be close to the start of the parade route because we wouldn't be able to stay for the whole thing because we had a meeting with Jack's in home BCBA an hour and a half after the parade started. Well it was PACKED down by the start. We found a spot behind a woman and her child. Perfect! The boys could be situated so they could see. Well the parade started and up came five adults to sit with that woman and child. Annoying. No one could really see anything. And then Jacob was holding Jack up so he could watch and Jack peed EVERYWHERE! All over himself and Jacob. So we had to leave. Bring on major meltdowns by both children. We dragged two screaming kids back to the car, peeled Jack's soaked pants and pull up off and put on a new one. I of course in my infinite wisdom didn't bring extra pants with us so Jack freaked out about not having pants. He found an empty matchbox package in the back of the car and was screaming about wanting the cars on the back of the package (why do manufacturers do this??). We then had a long drive home through major traffic and detours with Jack screaming in the backseat and Liam yelling at him to stop screaming. Epic Mommy fail. And of course the meeting we had to come home for never even happened. Why can't I get a break?!?
The boys have been up off and on all night for the last two nights. A solid night sleep is really the only thing that gets me through the day. I'm running on empty.
And none of the things we wanted to get done yesterday got done. Absolutely nothing. Yup, this is me in major pouting mode.
I refused to go to church this morning. Jacob took both boys with him and went anyway. I should be either cleaning or napping. But I don't want to do either. I've wasted over an hour just staring at the computer screen. I'm going to regret this.
It's just so hard to do anything when you feel empty inside.
We've been really slacking on a lot of things we had once been so good at. We rarely sit down and eat meals together since Jacob's work schedule is so insane. When we were at Jack's meeting Friday they asked what his eating habits were at home... Insert complete embarrassment. With things being so nuts I really just let him pick whatever he wants and if he refuses to sit at the table I don't push it. It's just not worth the battles these days. And with him being so insanely picky these days I'm really just glad he's eating. Well, this is probably NOT helping the issue of eating lunch at school. My bad. Three year olds just don't understand that things aren't always the same at home and school. So being able to eat whatever, whenever at home is really (more than likely) making lunch time a horrible task for him at school. Ugh. Now we must start regulating home eating yet again. Something we should do anyway, after all, it is the right thing to do. But it's hard... And I just don't want to do it gosh darn it!
We used to take the boys out on at least one outing per weekend. We really haven't been able to do it lately because Jacob's schedule is INSANE and after last weekend's incident I definitely am not doing it myself. But we should, neither of the boys are going to learn to control themselves in public if they never are. Liam's excellent, but it's because I take him out with me whenever I run errands during the week while Jack's at school. But when the boys get together it's just chaos. Yesterday we tried to take the boys to the Christmas parade in the town next to us. We of course got going late (I was surprisingly on the ball and had everything ready to go and in the car LONG before we left, but a certain someone wouldn't get off the couch and get in the dang shower). I figured we should be close to the start of the parade route because we wouldn't be able to stay for the whole thing because we had a meeting with Jack's in home BCBA an hour and a half after the parade started. Well it was PACKED down by the start. We found a spot behind a woman and her child. Perfect! The boys could be situated so they could see. Well the parade started and up came five adults to sit with that woman and child. Annoying. No one could really see anything. And then Jacob was holding Jack up so he could watch and Jack peed EVERYWHERE! All over himself and Jacob. So we had to leave. Bring on major meltdowns by both children. We dragged two screaming kids back to the car, peeled Jack's soaked pants and pull up off and put on a new one. I of course in my infinite wisdom didn't bring extra pants with us so Jack freaked out about not having pants. He found an empty matchbox package in the back of the car and was screaming about wanting the cars on the back of the package (why do manufacturers do this??). We then had a long drive home through major traffic and detours with Jack screaming in the backseat and Liam yelling at him to stop screaming. Epic Mommy fail. And of course the meeting we had to come home for never even happened. Why can't I get a break?!?
The boys have been up off and on all night for the last two nights. A solid night sleep is really the only thing that gets me through the day. I'm running on empty.
And none of the things we wanted to get done yesterday got done. Absolutely nothing. Yup, this is me in major pouting mode.
I refused to go to church this morning. Jacob took both boys with him and went anyway. I should be either cleaning or napping. But I don't want to do either. I've wasted over an hour just staring at the computer screen. I'm going to regret this.
It's just so hard to do anything when you feel empty inside.
Sunday, November 28, 2010
Riding the wave...
I'm just not sure "where I am" anymore... I sincerely feel as though I'm in the middle of the ocean. Just riding the waves. Sometimes they consume me. Sometimes I stay afloat. Nothing lasts very long. Just up and down, up and down.
Stuff with Jack's school isn't going well. I really thought after our meeting things would get better but they still aren't doing the things they need to. I really just don't think they have the capabilities to do what he needs. But they really don't want to give him a one-to-one tutor. Looks like this is going to be the battle I thought it would be after all. They want to push back his meeting but I'm trying not to let that happen. We're going on two months of regression here, I don't have another week to spare...
Yesterday I had to run to the exchange and the commissary. Jacob was working so I decided I would take both kids, by myself. Something I never do. It's just so incredibly hard when you have a child who is completely and utterly unpredictable. We raced through both stores and things were going great! I was so excited, maybe I can do this! Maybe I can start taking both kids by myself, like a "typical" parent... But when we went to leave the commissary we had to exchange the car cart (a cart with a little car attached to the front) for a regular cart because you can't take them out of the store. I had Liam directly in front of me "helping" me push the cart and Jack was along side of it holding on, just as he's supposed to. We walked out the first door and Jackson sprinted. Of course right into the parking lot. Can you say heart attack? I stopped the cart and told Liam to stay right there (probably not the smartest thing, but in the moment I didn't know what else to do and Liam listens incredibly well). I ran as fast as I could to grab Jack before he made it into the main body of the parking lot. Thankfully I caught him. Thankfully he didn't get hit by a car! Ugh! He of course didn't understand that he had done anything wrong at all. Sometimes little things in life can be so incredibly hard when you're dealing with Autism... So much for being able to take both kids by myself. It will be a long time before I dare to do that again.
I've been having some incredibly weird dreams lately. The most recent one was that the Joker (yes, the joker from batman) was crashing airplanes. First one crashed just outside the back gate to our base. Then I had to go somewhere and was seated on an airplane when he strode on. All the passengers (including myself) were ranting and raving about how he couldn't be on the plane but no one was doing anything. He stayed on the plane as we got ready to take off. I woke up covered in sweat and shaking so hard I felt as though I was having a seizure. Strange dream... But I feel like it kind of represents where my life is right now. I feel like I'm on a plane that everyone knows is coming down... But no matter how much I know that I don't get off the plane... Why don't I just get off the plane? So many of the things in my personal (meaning my own, not with my family) struggles are things that I could just walk away from, things that I could change. But I choose to sit here and wallow. Sometimes when you're down in the bottom of a deep, dark pit it's hard to fight to find a way out. Sometimes I just want to lay down. Sometimes I just don't want to fight...
Last night we went to Vespers at church. I was one of the first to walk out of the church and into the entry way. There was a woman standing there who I've seen many times before. She has a grown son with Autism. I know this but I've never actually spoken to her. So we began talking, I asked her how her thanksgiving was, she then talked about her son and said that he has Autism. I told her my son does too. She then went on to ask questions like "Does he talk?" Jack was non-verbal when he was diagnosed at age 2 but we've come incredibly far and now he has quite an extensive vocabulary... The progress we've made is really remarkable. Jack does have Autism, he really does. But people seem to doubt me, as if I'm lying about it. Sometimes it feels like Jack isn't "autistic enough" to actually be autistic. Autism is a disorder that has a wide range of symptoms. Some people are severely Autistic and others very mildly. When Jack was diagnosed he was right at about a 1/3 of the way across the scale. Right in the middle of mild-moderate. I don't know where he would fall anymore... He has come a long way. Many of the things we struggle with are things that people wouldn't know or see if they weren't trained. And so consequently sometimes it feels like people don't believe me. He just looks like an unruly child, and I a bad parent. Sometimes my mind wanders in strange ways, maybe Jack ISN'T Autistic, maybe I AM just a bad mother... I know deep down this isn't true. I've put my blood, sweat, and tears into getting Jack where he is today. But sometimes I can't help but just feel awful about everything...
All in all the conversation was incredibly awkward with the woman from church. Which is exactly why I don't do support groups or any thing else like that. I don't want to sit and compare my child with others. I don't want other people judging me or my child. I guess the plan is just to continue to plug away at this beast we call Autism and hope that someday we won't have to... Someday things will be different...
Stuff with Jack's school isn't going well. I really thought after our meeting things would get better but they still aren't doing the things they need to. I really just don't think they have the capabilities to do what he needs. But they really don't want to give him a one-to-one tutor. Looks like this is going to be the battle I thought it would be after all. They want to push back his meeting but I'm trying not to let that happen. We're going on two months of regression here, I don't have another week to spare...
Yesterday I had to run to the exchange and the commissary. Jacob was working so I decided I would take both kids, by myself. Something I never do. It's just so incredibly hard when you have a child who is completely and utterly unpredictable. We raced through both stores and things were going great! I was so excited, maybe I can do this! Maybe I can start taking both kids by myself, like a "typical" parent... But when we went to leave the commissary we had to exchange the car cart (a cart with a little car attached to the front) for a regular cart because you can't take them out of the store. I had Liam directly in front of me "helping" me push the cart and Jack was along side of it holding on, just as he's supposed to. We walked out the first door and Jackson sprinted. Of course right into the parking lot. Can you say heart attack? I stopped the cart and told Liam to stay right there (probably not the smartest thing, but in the moment I didn't know what else to do and Liam listens incredibly well). I ran as fast as I could to grab Jack before he made it into the main body of the parking lot. Thankfully I caught him. Thankfully he didn't get hit by a car! Ugh! He of course didn't understand that he had done anything wrong at all. Sometimes little things in life can be so incredibly hard when you're dealing with Autism... So much for being able to take both kids by myself. It will be a long time before I dare to do that again.
I've been having some incredibly weird dreams lately. The most recent one was that the Joker (yes, the joker from batman) was crashing airplanes. First one crashed just outside the back gate to our base. Then I had to go somewhere and was seated on an airplane when he strode on. All the passengers (including myself) were ranting and raving about how he couldn't be on the plane but no one was doing anything. He stayed on the plane as we got ready to take off. I woke up covered in sweat and shaking so hard I felt as though I was having a seizure. Strange dream... But I feel like it kind of represents where my life is right now. I feel like I'm on a plane that everyone knows is coming down... But no matter how much I know that I don't get off the plane... Why don't I just get off the plane? So many of the things in my personal (meaning my own, not with my family) struggles are things that I could just walk away from, things that I could change. But I choose to sit here and wallow. Sometimes when you're down in the bottom of a deep, dark pit it's hard to fight to find a way out. Sometimes I just want to lay down. Sometimes I just don't want to fight...
Last night we went to Vespers at church. I was one of the first to walk out of the church and into the entry way. There was a woman standing there who I've seen many times before. She has a grown son with Autism. I know this but I've never actually spoken to her. So we began talking, I asked her how her thanksgiving was, she then talked about her son and said that he has Autism. I told her my son does too. She then went on to ask questions like "Does he talk?" Jack was non-verbal when he was diagnosed at age 2 but we've come incredibly far and now he has quite an extensive vocabulary... The progress we've made is really remarkable. Jack does have Autism, he really does. But people seem to doubt me, as if I'm lying about it. Sometimes it feels like Jack isn't "autistic enough" to actually be autistic. Autism is a disorder that has a wide range of symptoms. Some people are severely Autistic and others very mildly. When Jack was diagnosed he was right at about a 1/3 of the way across the scale. Right in the middle of mild-moderate. I don't know where he would fall anymore... He has come a long way. Many of the things we struggle with are things that people wouldn't know or see if they weren't trained. And so consequently sometimes it feels like people don't believe me. He just looks like an unruly child, and I a bad parent. Sometimes my mind wanders in strange ways, maybe Jack ISN'T Autistic, maybe I AM just a bad mother... I know deep down this isn't true. I've put my blood, sweat, and tears into getting Jack where he is today. But sometimes I can't help but just feel awful about everything...
All in all the conversation was incredibly awkward with the woman from church. Which is exactly why I don't do support groups or any thing else like that. I don't want to sit and compare my child with others. I don't want other people judging me or my child. I guess the plan is just to continue to plug away at this beast we call Autism and hope that someday we won't have to... Someday things will be different...
Saturday, November 20, 2010
The Grace of God
Yesterday was "the big day." Our meeting with Jack's school. We've had so many problems recently and I've watched my son slowly slip back into what he once was... Just a shell of a beautiful boy whom I love so deeply. The hardest part of Autism is the regressions- don't get me wrong, there are many other difficult things we encounter, some even on a daily basis, but it's so hard to watch him slide backwards. To lose skills, words, behaviors that he once had. To watch all of our hard work slowly slip out from between your fingers. Now I do not believe that I am entirely without fault in this, but I truly feel that the brunt of this regression is on his school. The things they are doing and aren't doing and unraveling our lives. It's so frustrating to watch these people who are trained to deal with these things choosing to deal with them incorrectly or even not at all. No matter how hard we fight, no matter what we do, we cannot undo the damage if it is still occurring...
I had been so incredibly nervous for this meeting. Jack's teacher really seems to hate me, I have no idea why, I've never been anything but polite and courteous to her. I know that it must be horrible having parents constantly bombarding you for answers, details, any bits of anything we can take away from his day there but these are absolutely necessary to us rectifying the regression that is taking place. I am his mother, I NEED to know what is going on! She says unkind things, pushes my buttons, offends me, and doesn't want to do the things I'm asking of her. It's so hard to see someone seemingly "not care" about my child's well-being. But what really gets me is what appears to be her utter disdain for my desire to fix things. I know what my child is capable of. I know what he needs. Why can't we just work together to fix this?
I kept Jack home from school yesterday so we could just have a calm day around the house together. The boys were watching some cartoons and I was folding laundry when Jack looked up at me and said that he wanted to listen to "rock and roll." We only listen to Christian music in our home (except a couple secular bands that I occasionally listen to) so I turned on last.fm on the Xbox and changed it to a Casting Crowns station. The second song that came on was "Revelation" by Third Day, one of my favorite songs ever. Jack came over to me, stretched his arms out, and said "up please." When I picked him up he wrapped his arms around my neck and laid his head on my shoulder and we danced around our living room for what felt like an eternity. There is no doubt in my mind that that moment, that dance, that song was a gift from God. A sign. Showing me that I CAN do this. We can do this. And by the grace of God we will. He will strengthen us and carry us when we can't seem to do it on our own. As the tears streamed down my face I felt peace like I haven't felt in forever... And that was exactly what I needed to get me through yesterday's meeting. What an incredible blessing!
We will get through this... We can do this... With God all things are possible!
I had been so incredibly nervous for this meeting. Jack's teacher really seems to hate me, I have no idea why, I've never been anything but polite and courteous to her. I know that it must be horrible having parents constantly bombarding you for answers, details, any bits of anything we can take away from his day there but these are absolutely necessary to us rectifying the regression that is taking place. I am his mother, I NEED to know what is going on! She says unkind things, pushes my buttons, offends me, and doesn't want to do the things I'm asking of her. It's so hard to see someone seemingly "not care" about my child's well-being. But what really gets me is what appears to be her utter disdain for my desire to fix things. I know what my child is capable of. I know what he needs. Why can't we just work together to fix this?
I kept Jack home from school yesterday so we could just have a calm day around the house together. The boys were watching some cartoons and I was folding laundry when Jack looked up at me and said that he wanted to listen to "rock and roll." We only listen to Christian music in our home (except a couple secular bands that I occasionally listen to) so I turned on last.fm on the Xbox and changed it to a Casting Crowns station. The second song that came on was "Revelation" by Third Day, one of my favorite songs ever. Jack came over to me, stretched his arms out, and said "up please." When I picked him up he wrapped his arms around my neck and laid his head on my shoulder and we danced around our living room for what felt like an eternity. There is no doubt in my mind that that moment, that dance, that song was a gift from God. A sign. Showing me that I CAN do this. We can do this. And by the grace of God we will. He will strengthen us and carry us when we can't seem to do it on our own. As the tears streamed down my face I felt peace like I haven't felt in forever... And that was exactly what I needed to get me through yesterday's meeting. What an incredible blessing!
We will get through this... We can do this... With God all things are possible!
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