They say that autism parents have stress levels similar to combat soldiers. I do not doubt this. Some lives are easier than others, but in the long run, it really does take it's toll. There are doctors, specialists, and fights with the school. There are battles over schedules, food, and responsibility. There are a lot of battles. Most families seek out a local support system to help them survive the turmoil and stress that, just getting through some days requires. I envy those people. I don't envy many people. I am usually pretty content with our family and what we have been dealt. I am a strong and capable woman. I know this and find more strength in myself daily. It doesn't come without a price.
I may not have a strong support system, for what seems to everyone around me, to be things I should just figure out how to handle. However, I AM the support system for them. I am the baby of the children and eldest of the grandchildren. I am the only one with special needs kids, or kids between the ages of two and fifteen. I run myself ragged, day in and day out, just to get my own life to function. Still, most days, I am the only responsible adult around, other than my wife. When push comes to shove and tragedy rears it's very ugly head, we shoulder the brunt of the difficult stuff.
I won't go into detail, but this week, we had a very scary family emergency. I admit, my family is really good at running a telephone game, but action... It's not there. Someone very near to me came as close to deaths door as anyone can. When I received the call, nothing had been done about her son. Nobody had gone to get him. He's a teen and said some angry teen things when the family stepped up. His eyes saw the family taking his mom. Never mind that she was sick. He saw them taking her away. I get it.
Anyway, I flew into action. I immediately secured numbers and called around. I arranged for him to come here. I picked him up and sheltered and cared for him for three days. His mom is in the hospital. Someone needed to care for him. I honestly don't mind that. What really gets me, is this: With all the family here, how is it that I was the only one to go to the hospital everyday and take him back and forth an hour to his house and still keep my own schedules with my own kids?
The rest of the family gets time to process it all. They get to cry in the privacy of their homes at night and step away from it all. I brought it home. They call and tell me how or what to say to this boy because he is so angry. It is so important to them for him to understand everyone else's position. His emotions and processing don't seem to matter. They may have tried the blunt approach to get through his panic, but some of the things said to this child were terrible. Hell, some of the things they said to his mom were not so great, even if they were true.
The whole situation was badly handled. I spent three days talking and being there for a boy who nearly lost his mother and they did everything they could to make it as miserable as they could, for him. They dragged him into family discussions that NO child should be a part of. They included family members in those discussions that had no real place in them. They ostracized this child to the point that he blocked their numbers for a good two days. All the while, I am doing what I do around here with my own kids, plus taking care of his needs. That meant a lot of driving and a lot of putting out fires.
I see where the family wants him to see things correctly, but as long as he is burying the pain, he isn't going to see much of anything. I took him home yesterday. I am waiting to hear if he will be returning for a few days, during the holidays. He's a good kid. Today was really hard for me. (Here is where we come back around to that stress level.) I live with this heightened level of stress. I guess I just forget that I am the family firefighter too. While everyone decompressed and handled their grief and shock in their own way, I was holding it together and doing what I had to to make sure we didn't lose him.
In the quite of the morning and the uncertainty of the days to come, I had a little time to think. Yes, I have been protecting this boy and getting him through, but I almost lost her too. I can't fully come out of crisis mode because, honestly, this is far from over, but I need to let some of it out. I almost lost her. It was like a tidal wave of emotions. I pushed most of them back down, but it was enough.
I finally ate something. It seems that I forgot to do that. I was too worried about making sure he did. I have been plagued with nightmares, that until I really looked at them today, didn't make sense. I am afraid for me and my family. My wife is so capable, but to do this alone is a daunting thought. I have no doubt that my family would circle the wagons, but what happens when I am not there to put out the flames? What if it is me? Who is going to remain calm? Who is going to put my children ahead of any agenda and treat them with dignity and respect? I don't know. I really don't. I mean, I brought her underwear in the hospital. Somehow, I found time between school, stress, running the kids around, and family life, to go shopping for her and bring them down to her. Underwear. Simple thing. She was asking. Why did nobody do this for her?
I bet if I asked, they would tell me they didn't have time. Nobody ever has time. I needed time today. I needed somebody to look at what my family did this week and say, "You did so much. We appreciate it. You must be tired. Let me take the kids for an hour or two." Funny thing is, I haven't gotten a call all day. I did my job. Now, my family is shuffled back to the section everyone ignores. I am left to pull myself together and still function, when really, I just need one day or night to cry it out and deal with it all.
I would never change who I am at my core. I will always be there to help. I will never leave a child in the cold and I will always be there to help. Just, sometimes, I wish it was more of a two way street. I guess the point of this all is, don't overlook what others are doing for you. Don't underplay the acts or help. Appreciate what you have. It is hard to be an autism mom. It is infinitely harder to be an autism mom and the family firefighter. Hug your level headed family member. Be a shoulder to the one who didn't look inward and really put themselves out there as a stress sponge. Appreciate that. Not many people are like that.
I am not completely selfless, but I do value family and children. I hope that others do so as well.
Friday, December 20, 2013
Saturday, December 14, 2013
Mommy Guilt
When you get pregnant, people tell you to rest up. You won't be getting sleep. Your parents tell you all your own baby stories. They tell you to buy diapers a size too big. They tell you you don't need all that fancy nonsense like diaper pails and wipe warmers. There is all this advice coming at you from every direction. Some of it is good, some of it is not so good, but it is a virtual treasure trove of advice.
When your kid turns two, they tell you that he will be into everything. She will hide all your stuff. He will throw temper tantrums. Just as they are about to turn three, they tell you that it isn't REALLY the terrible twos, but that three is worse. They tell you to expect it to get worse.
As the years go on, they tell you what milestones and things you can expect. They tell you how you should do or handle something. For a neuortypical child, this is stereotyping at it's best. For kids on the spectrum, it's like a big neon sign that says, "You are doing it wrong."
Thing is, despite the makeup of your neurology, us moms get mommy guilt. We really do. Why our parents or parents of older children don't tell us about this, I have no idea. It is awful. There is some sort of rite of passage amongst parents that says at one time or another, probably several times, you are going to feel like a failure. Somewhere in the secret mommy manual, which I ripped up and burned, we aren't supposed to talk about it.
Why does my kid talk to me like that? Why can't they keep their hands to themselves? Why is no not sufficient? Why are they so destructive? Why do they have to steal instead of ask for things? The list goes on and on. Where did I go wrong? What could I have done different? How did I NOT teach my child that is not alright? And here is the thing...
You did. Well, you most likely did. Most parents do. However, kids entering their teen years and beyond throw out all we taught them and try to find their way. Usually their way is full of really bad choices and behaviors. It isn't an indication of your skill as a parent, it means you did something right. Your kid is trying to find their way in the world instead of being a sheep amongst lions.
The fact that you are sitting there, crying your eyes out, about what you should have, could have done different, tells me something about you. It tells me something about me, when I clean the tear tracks and snot off my face. If I was a horrible parent that never taught my children these lessons, I wouldn't be so upset when they were not putting them to use. If you feel like you failed, then you tried. In today's society, that is more than a lot of parents do. It doesn't mean that you failed. It means you care enough to worry that you did. It means you are thinking about how to change the cycle or behavior. It means that you are being a good parent.
You see your child suffering and you just want to fix it, but they aren't babies anymore. Sometimes, they have to fix it themselves. Notice that your mommy guilt doesn't say what did THEY do wrong. It says what did *I* do wrong. That tells me that their suffering is impacting you, but the mommy in you wants to fix it. It's alright to be sad about the choices our children make, but as they get older, they do have to make them. No matter the lessons we impart, they will fall. They will make mistakes. That is part of life. It isn't what you could have done differently. For them, it is a learning experience. You taught them to behave, act, and speak a certain way. Now they want to know why the other way is not ok.
It's something we should be telling each other. Why we suffer through this guilt alone, is beyond me. We all share it. It's something we all go through. The fear and guilt of having a child grow up and test boundaries needs to be something people tell you.
Just know, you aren't alone. Millions of mommies out there share that guilt. We cry. We shout to the heavens. We hide our faces in fear that it is our fault. It's not. It's part of growing up. Not just for them, but for us too. We have to go through this. I don't know why yet. I am still in the middle of it, but maybe someday I will.
When your kid turns two, they tell you that he will be into everything. She will hide all your stuff. He will throw temper tantrums. Just as they are about to turn three, they tell you that it isn't REALLY the terrible twos, but that three is worse. They tell you to expect it to get worse.
As the years go on, they tell you what milestones and things you can expect. They tell you how you should do or handle something. For a neuortypical child, this is stereotyping at it's best. For kids on the spectrum, it's like a big neon sign that says, "You are doing it wrong."
Thing is, despite the makeup of your neurology, us moms get mommy guilt. We really do. Why our parents or parents of older children don't tell us about this, I have no idea. It is awful. There is some sort of rite of passage amongst parents that says at one time or another, probably several times, you are going to feel like a failure. Somewhere in the secret mommy manual, which I ripped up and burned, we aren't supposed to talk about it.
Why does my kid talk to me like that? Why can't they keep their hands to themselves? Why is no not sufficient? Why are they so destructive? Why do they have to steal instead of ask for things? The list goes on and on. Where did I go wrong? What could I have done different? How did I NOT teach my child that is not alright? And here is the thing...
You did. Well, you most likely did. Most parents do. However, kids entering their teen years and beyond throw out all we taught them and try to find their way. Usually their way is full of really bad choices and behaviors. It isn't an indication of your skill as a parent, it means you did something right. Your kid is trying to find their way in the world instead of being a sheep amongst lions.
The fact that you are sitting there, crying your eyes out, about what you should have, could have done different, tells me something about you. It tells me something about me, when I clean the tear tracks and snot off my face. If I was a horrible parent that never taught my children these lessons, I wouldn't be so upset when they were not putting them to use. If you feel like you failed, then you tried. In today's society, that is more than a lot of parents do. It doesn't mean that you failed. It means you care enough to worry that you did. It means you are thinking about how to change the cycle or behavior. It means that you are being a good parent.
You see your child suffering and you just want to fix it, but they aren't babies anymore. Sometimes, they have to fix it themselves. Notice that your mommy guilt doesn't say what did THEY do wrong. It says what did *I* do wrong. That tells me that their suffering is impacting you, but the mommy in you wants to fix it. It's alright to be sad about the choices our children make, but as they get older, they do have to make them. No matter the lessons we impart, they will fall. They will make mistakes. That is part of life. It isn't what you could have done differently. For them, it is a learning experience. You taught them to behave, act, and speak a certain way. Now they want to know why the other way is not ok.
It's something we should be telling each other. Why we suffer through this guilt alone, is beyond me. We all share it. It's something we all go through. The fear and guilt of having a child grow up and test boundaries needs to be something people tell you.
Just know, you aren't alone. Millions of mommies out there share that guilt. We cry. We shout to the heavens. We hide our faces in fear that it is our fault. It's not. It's part of growing up. Not just for them, but for us too. We have to go through this. I don't know why yet. I am still in the middle of it, but maybe someday I will.
Friday, November 1, 2013
Bringing My Daughter Home
Some of you will understand this. Some of you have been where I have been, or seen what I have seen. Far too many of you have probably gone through something similar. Most of you will be able to relate this to someone in your life. Today I did something that was harder than I thought it would be. It's ironic to think that 8 years ago, I did the opposite but said the same thing. It was a solemn thing. The only one in the house that really took internal note of what I was doing was SS. Today, I brought my daughter home.
Ten years ago, as many of you know, I lost my first baby girl. It was a very dark time in my life. I had a very difficult time moving on. For years, I was lost in this haze that never seemed to go away. I lived my life, day in and day out. I had another child. Yet, I could never quite get there. I made a very difficult decision after 2 years of not feeling like I was making progress. I made the decision to bury my daughter's ashes. It was a finality for me that I thought I needed.
My grandmother stepped in while we were making the plans. She asked if she could hold onto my daughter's ashes until she passed away, in order for them to be buried together. I found that to be an amazing request from a woman I regarded as more my mother. I agreed, backed by my whole heart. What I didn't realize was, I think my grandmother knew that I needed the space to grieve, but I wasn't really ready to put her to rest. She is a wise woman. I have always known that, but today, I realized how intuitive she really is.
So, my daughter's little lavender box with her ashes went to live with my grandmother. She has been there for 8 long years. When I visit my grandmother, I always stop to say hello or tell her I love her. She was not forgotten, nor was she any less loved.
My grandmother went into surgery last week. During her recovery for the next few weeks, she is not staying at home. It bothered me that my daughter was alone in the house. There was nobody there. I asked my grandmother if she minded if I brought her home until she recovered. She smiled at me and asked me if it was that time. I didn't understand in the moment, but I do now.
My grandmother is getting on in life. Her health has been declining. Though she looks as hale as ever, the reports say different. She knows that. She knew I would need time to say goodbye. She knew before I did. I do need that little bit of time. She has been gone ten years now and it feels like yesterday. I need this time because in the end, it really will be a final goodbye for me.
I picked her up today. SS asked what it was I was carrying and I showed her. She looked at me with a solemn and sad face. I told her that it was alright. That we just needed to bring her home until grandma gets better. She was very quiet.
She said, "I never met her, but I feel like I know her. I miss her. She was my sister."
It doesn't get more real than that. We all need this time to come to terms with something that is a complex and emotional situation. They need to make peace with this sibling that they never knew. I need to take the time to say goodbye. I need to be ready to put her to rest for a final time. Even if she isn't here, her ashes are. That has always been the thing that held me from healing. I had something of her on this earth. It is time for me to make my peace with myself and with her.
I will always love her. She is always in my heart and moving around my soul, and now, she is in my home as long as we can hold on to her. Then, when it is time, maybe it will be easier to bury what I have left of her. It's nice to know that she will have my grandmother and my grandmother her, when that time comes. Until then, my daughter is home where she belongs.
Ten years ago, as many of you know, I lost my first baby girl. It was a very dark time in my life. I had a very difficult time moving on. For years, I was lost in this haze that never seemed to go away. I lived my life, day in and day out. I had another child. Yet, I could never quite get there. I made a very difficult decision after 2 years of not feeling like I was making progress. I made the decision to bury my daughter's ashes. It was a finality for me that I thought I needed.
My grandmother stepped in while we were making the plans. She asked if she could hold onto my daughter's ashes until she passed away, in order for them to be buried together. I found that to be an amazing request from a woman I regarded as more my mother. I agreed, backed by my whole heart. What I didn't realize was, I think my grandmother knew that I needed the space to grieve, but I wasn't really ready to put her to rest. She is a wise woman. I have always known that, but today, I realized how intuitive she really is.
So, my daughter's little lavender box with her ashes went to live with my grandmother. She has been there for 8 long years. When I visit my grandmother, I always stop to say hello or tell her I love her. She was not forgotten, nor was she any less loved.
My grandmother went into surgery last week. During her recovery for the next few weeks, she is not staying at home. It bothered me that my daughter was alone in the house. There was nobody there. I asked my grandmother if she minded if I brought her home until she recovered. She smiled at me and asked me if it was that time. I didn't understand in the moment, but I do now.
My grandmother is getting on in life. Her health has been declining. Though she looks as hale as ever, the reports say different. She knows that. She knew I would need time to say goodbye. She knew before I did. I do need that little bit of time. She has been gone ten years now and it feels like yesterday. I need this time because in the end, it really will be a final goodbye for me.
I picked her up today. SS asked what it was I was carrying and I showed her. She looked at me with a solemn and sad face. I told her that it was alright. That we just needed to bring her home until grandma gets better. She was very quiet.
She said, "I never met her, but I feel like I know her. I miss her. She was my sister."
It doesn't get more real than that. We all need this time to come to terms with something that is a complex and emotional situation. They need to make peace with this sibling that they never knew. I need to take the time to say goodbye. I need to be ready to put her to rest for a final time. Even if she isn't here, her ashes are. That has always been the thing that held me from healing. I had something of her on this earth. It is time for me to make my peace with myself and with her.
I will always love her. She is always in my heart and moving around my soul, and now, she is in my home as long as we can hold on to her. Then, when it is time, maybe it will be easier to bury what I have left of her. It's nice to know that she will have my grandmother and my grandmother her, when that time comes. Until then, my daughter is home where she belongs.
Friday, October 25, 2013
Me
I have been sitting on this blog for two days. It's hard to pinpoint exactly why I can't seem to get it out there, but it really has been difficult. I thought that I was doing well. I have been doing everything I should. Things are coming together and it felt good. I was sort of brought up short yesterday by a judgement of my character that was so very wrong.
The thing about the comment was that it honestly could have been a compliment. It should have been. Yet, I felt like this person should have known me better. It made me wonder how well I put up a front. I thought it was time to be honest with myself. I needed to reflect. The awful thing about the reflection is that I still don't like what I see. Even with all the changes and steps forward, I don't see myself the way others obviously are. So, I thought if I got it out. Really talked about who I am and how I feel, it might help. This may never see print. It might. I guess it really depends on how well I express myself. I started in poetry, so this may go very metaphorically.
When I look in the mirror every day, I absolutely HATE the person looking back at me. I hate the weight gain and the feeling that I am just not remotely attractive anymore. I hate that I have bags under my eyes. I never really smile for the sake of it anymore. It's not that I am not happy. I am. I just don't deserve to be. That girl staring back at me, she's the one person I can honestly say I hate. I have a self loathing so deep, most people would probably be shocked to hear it. As my physical body falls prey to the darkness that is my perception of myself, it just gets worse. It's like a run away train, but it seems to have no plans of stopping anytime soon.
I grew up under the heading of "NOT GOOD ENOUGH." I have lived there my whole life. Nobody intended that for me, but it was how it was. I was too curious. I was too talkative. I was too forward. I needed to be more like a girl/less like a girl. All of this in childhood. I needed to watch my weight. I could not wear my hair that way because it looks like I didn't care. I had to wear this. I couldn't wear that. I was too slow. I was too fast. I cried all the time. I never showed emotion. All of this in my teens. The cycle kept going. I shouldn't date him. I should marry him. I should run from him. I should do this/that different in my marriage or with my kids. My kids are that way because I do this. I should grieve for my daughter as long as I need. I should just get over her. I should take my kids outside more often. I should protect their health and find indoor activities. It just goes on and on. I was never good enough. I have spent my life watching others and hoping I could catch on and find the "right" answer, but as soon as I did, I was wrong.
Since I took my life back and stopped listening to those people that did that, whether they knew it or not, I haven't seen so much of it. They have learned to accept that they couldn't do this. It doesn't change the damage done. No matter how good I get at something, someone is always going to question it. If they don't, because I was raised to feel inferior, I will. I will always question myself. I cannot name the times in a week that I say, "My head says..." because I know that how I feel and the reality can be different. This goes for all aspects of my life. I will always question my choices. If I am called out for something, I take it to heart because I know, whether they do or not, it's my fault. It always is.
As I grew into my own, people started realizing that I had grown up. They started to realize I was a grown up that was seen as responsible. With responsibility comes no little amount of expectations. Now, I am expected to do all manner of things, even when it means dropping important appointments or schedules in my own family to do them. I am expected to do them as an adult of the family, PTA, etc. Guess what? I never get those right either. As a matter of fact, when all that gets added into my already insane routine, I start getting my own stuff wrong.
Now, I know some of this is just that "not good enough" demon running around in me, but I screw up more than anyone I know. I forget dates, birthdays, appointments. If I don't forget them, I mix them up. I have tried date books, reminders, and other assorted things. They don't work. So, I throw myself into it harder and faster, trying desperately to prove I am not a screw up. I put in all I have to prove that I am good enough.
As I do this, I let my marriage slip. I am so concentrated on proving I can do something right, that I unknowingly step down there. So, my appointment life is going well, but my marriage is getting more tense. Alright, I need to find a balance. I reach for that balance, but ultimately, something falls through and I screwed up again. Sometimes it's small, but most of the time, it feels really big. I have so many things going on, most of which can't be put off or let go, and I am screwing them all up. Sometimes, I feel like the universe is playing an epic joke on me. I honestly feel like I can't win. Then, when something goes right, I question it because I know I don't deserve it. This is me.
I have no faith in myself. I don't feel strong. I feel like a grain of sand in a very large ocean. I swell out with the tide, only to be pummeled over and over by the ever rising and falling waves. I see my life in all it's colorful glory. Some of those colors are ugly as hell. Some choices I questioned at the time of making them, I have deemed the right choice. The thing is, I will always question my choices, even long after they are gone. If I always live in this cycle of feeling not good enough, I will always question where I went wrong. I love my life and the people in it, but I look at them and wonder, how in the hell do they love me. I sure as hell don't.
If I seem different, it is from a lifetime of learning to cover up my true feelings. The majority of anger and upset that people see, is directed at me. It is, yet another, clear reminder that I won't ever cut it. It's just a projection of how I feel about me. I don't question how I got lucky. I am afraid to. I have a wonderful wife and two beautiful kids. I do wonder what they see in me, but I don't question it. I think that they are why I have gotten as far as I have. They keep me sane.
I am getting better about all of it. I am learning to trust my wife, and a few others, as to when to question and when to simply let it be. They are teaching me how to at least be alright with myself. It's a long road. I have spent a very long time feeling worthless. I am slowly starting to see worth in myself, but sometimes I wonder if I will ever see myself the way others do. There are few things that I have accepted. I am a good mother. I love my kids. I will always fight for my kids. I will always do what is right for them. I know enough to know that is true. I love my wife. I could stand to be a better one to her, and I need to, but I am working on it. As far as loving myself, maybe some day. You all know I am a fighter. I will fight for it. Let's just hope I do it right. Let's hope I am good enough to get there. Some days I think I might, but most days...
The thing about the comment was that it honestly could have been a compliment. It should have been. Yet, I felt like this person should have known me better. It made me wonder how well I put up a front. I thought it was time to be honest with myself. I needed to reflect. The awful thing about the reflection is that I still don't like what I see. Even with all the changes and steps forward, I don't see myself the way others obviously are. So, I thought if I got it out. Really talked about who I am and how I feel, it might help. This may never see print. It might. I guess it really depends on how well I express myself. I started in poetry, so this may go very metaphorically.
When I look in the mirror every day, I absolutely HATE the person looking back at me. I hate the weight gain and the feeling that I am just not remotely attractive anymore. I hate that I have bags under my eyes. I never really smile for the sake of it anymore. It's not that I am not happy. I am. I just don't deserve to be. That girl staring back at me, she's the one person I can honestly say I hate. I have a self loathing so deep, most people would probably be shocked to hear it. As my physical body falls prey to the darkness that is my perception of myself, it just gets worse. It's like a run away train, but it seems to have no plans of stopping anytime soon.
I grew up under the heading of "NOT GOOD ENOUGH." I have lived there my whole life. Nobody intended that for me, but it was how it was. I was too curious. I was too talkative. I was too forward. I needed to be more like a girl/less like a girl. All of this in childhood. I needed to watch my weight. I could not wear my hair that way because it looks like I didn't care. I had to wear this. I couldn't wear that. I was too slow. I was too fast. I cried all the time. I never showed emotion. All of this in my teens. The cycle kept going. I shouldn't date him. I should marry him. I should run from him. I should do this/that different in my marriage or with my kids. My kids are that way because I do this. I should grieve for my daughter as long as I need. I should just get over her. I should take my kids outside more often. I should protect their health and find indoor activities. It just goes on and on. I was never good enough. I have spent my life watching others and hoping I could catch on and find the "right" answer, but as soon as I did, I was wrong.
Since I took my life back and stopped listening to those people that did that, whether they knew it or not, I haven't seen so much of it. They have learned to accept that they couldn't do this. It doesn't change the damage done. No matter how good I get at something, someone is always going to question it. If they don't, because I was raised to feel inferior, I will. I will always question myself. I cannot name the times in a week that I say, "My head says..." because I know that how I feel and the reality can be different. This goes for all aspects of my life. I will always question my choices. If I am called out for something, I take it to heart because I know, whether they do or not, it's my fault. It always is.
As I grew into my own, people started realizing that I had grown up. They started to realize I was a grown up that was seen as responsible. With responsibility comes no little amount of expectations. Now, I am expected to do all manner of things, even when it means dropping important appointments or schedules in my own family to do them. I am expected to do them as an adult of the family, PTA, etc. Guess what? I never get those right either. As a matter of fact, when all that gets added into my already insane routine, I start getting my own stuff wrong.
Now, I know some of this is just that "not good enough" demon running around in me, but I screw up more than anyone I know. I forget dates, birthdays, appointments. If I don't forget them, I mix them up. I have tried date books, reminders, and other assorted things. They don't work. So, I throw myself into it harder and faster, trying desperately to prove I am not a screw up. I put in all I have to prove that I am good enough.
As I do this, I let my marriage slip. I am so concentrated on proving I can do something right, that I unknowingly step down there. So, my appointment life is going well, but my marriage is getting more tense. Alright, I need to find a balance. I reach for that balance, but ultimately, something falls through and I screwed up again. Sometimes it's small, but most of the time, it feels really big. I have so many things going on, most of which can't be put off or let go, and I am screwing them all up. Sometimes, I feel like the universe is playing an epic joke on me. I honestly feel like I can't win. Then, when something goes right, I question it because I know I don't deserve it. This is me.
I have no faith in myself. I don't feel strong. I feel like a grain of sand in a very large ocean. I swell out with the tide, only to be pummeled over and over by the ever rising and falling waves. I see my life in all it's colorful glory. Some of those colors are ugly as hell. Some choices I questioned at the time of making them, I have deemed the right choice. The thing is, I will always question my choices, even long after they are gone. If I always live in this cycle of feeling not good enough, I will always question where I went wrong. I love my life and the people in it, but I look at them and wonder, how in the hell do they love me. I sure as hell don't.
If I seem different, it is from a lifetime of learning to cover up my true feelings. The majority of anger and upset that people see, is directed at me. It is, yet another, clear reminder that I won't ever cut it. It's just a projection of how I feel about me. I don't question how I got lucky. I am afraid to. I have a wonderful wife and two beautiful kids. I do wonder what they see in me, but I don't question it. I think that they are why I have gotten as far as I have. They keep me sane.
I am getting better about all of it. I am learning to trust my wife, and a few others, as to when to question and when to simply let it be. They are teaching me how to at least be alright with myself. It's a long road. I have spent a very long time feeling worthless. I am slowly starting to see worth in myself, but sometimes I wonder if I will ever see myself the way others do. There are few things that I have accepted. I am a good mother. I love my kids. I will always fight for my kids. I will always do what is right for them. I know enough to know that is true. I love my wife. I could stand to be a better one to her, and I need to, but I am working on it. As far as loving myself, maybe some day. You all know I am a fighter. I will fight for it. Let's just hope I do it right. Let's hope I am good enough to get there. Some days I think I might, but most days...
Friday, October 11, 2013
Life's Not Fair....
If you have read my blog for any length of time, you know that once upon a time, I was the black sheep. I was the girl that would never grow up, the girl that got married too early and would fail, and the girl who wasn't considered responsible enough to have kids of her own. While, I concede that my marriage did not last, I can say that it lasted longer than most of my other family members' marriages, by a hell of a lot. I mean, my marriage to Puck has lasted longer than my own mother's. And yes, I was young when I first got married. When I had kids, I had a long road to really learn what being a mother was about. I got there, though. They will tell you. I got there. Somehow, I went from the black sheep to being the most commonly referred to as "responsible". Of all the aunts, cousins, and my own mother, Puck and I are considered to have the healthiest relationship. We are considered to be the most responsible, despite the living pay check to pay check. It took me until today to figure it out, though. I could not, for the life of me figure out why.
Today Puck had to go over to my grandmother's and do a few things. It wasn't anything much. She did a little shopping, washed the dishes, and made things more accessible for my grandmother. It was the first time either of us has done this for her, due to living the autism life. Apparently, my family has been "taking turns" to "care" for my grandmother. That sounds nice, doesn't it? If only it were the way it sounded. When they say taking turns, they mean that my mother goes over there four days a week and the rest of the family the other two. Now, before you feel bad for my mother, she IS the only one without children home and she does live closer than the rest of us, but come on! Both of my aunts have older teens. They should be able to carry something more than two days between them. Now, as you may recall, I stated this was our first time. That is true, but we have been told on numerous occasions that our children tire my grandmother out. We have been running all over kingdom come and, honestly, with this life, it is hard to add something extra in. We have been wanting to do more to help, but we were so completely unprepared for what they consider "care".
Puck did the shopping, to which we found out that the last time she went, was when I took her. She brought it into the house and chatted for a minute. Though my grandmother was obviously in pain, she stated she was fine. Yeah, my ass! Thankfully, Puck sees these things and knew she was hurting. My grandmother was insistent that the milk would not fit in the mini fridge, to which Puck told her that "she would make it." She did get it in there, but it got us thinking. Why did nobody else do this? She really can't walk, let alone be climbing stairs. Once the groceries were away, Puck grabbed the dirty dishes to take them upstairs, as my mother says she does every night, to wash them.
As she got up the stairs, she found dishes all over the counters, the stove, and in the sink. The dishwasher had not been run and was full. There were coffee and food stains all over the counter. How is this "taking care" of grandma? It took Puck 15 minutes to get this cleaned up and straightened out. It wasn't a one day mess. This was a culmination of dirty that was being ignored. Yet, someone in the family is there once a day. I don't understand. Puck was horrified. We then realized that they have been bringing her ONE meal every day. I don't eat much, but that is just ridiculous. This woman is the paramount female in our family. She not only raised her kids, but had a major hand in raising their kids' too. A dismissal like this, no, a disregard for this woman and her home is terrible. Now, we only have one car. We live on a limited income. Yet, if we had the key and the means, we both have said we would be there everyday as a silent entity. We wouldn't want the family to know because, let's be realistic, they would stop coming. They would assume we would just do it, except they aren't really doing it.
Now, here Puck and I stand in judgement of those that have spent a lifetime telling us that we aren't doing it right. They all agree that we have grown up and are the most responsible family, but it is now clear to me why. While they have been repeating their mistakes, living in their bubbles, and judging every move that we make, we have been raising two children with autism. As time goes by, we get better at time keeping, appointments, hectic routines, and life in general. We try really hard not to repeat mistakes because, in all honesty, we learned long ago that if it doesn't work, it doesn't work. Yes, we have done some unconventional things. We don't always do it the way others would, but it works. We found a way to make it work. When it stops working, we find a different way. We don't go back. They have all slipped into bottles of one sort or another, to stew in the troubles they have and how hard life has gotten with this extra chore. my mother has been stressed to her max with getting a room ready for my grandmother after her surgery. Yet, in two weeks, I haven't spoken to her after five that she wasn't at least tipsy.
We don't drink. We don't take vacations. We don't have that luxury. We are going from midnight to midnight. There is always someone awake here. We run from start to forever, because there is no finish. We would love a vacation. We would love to go visit family on the opposite coast. We would love to have a weekend getaway, just us. Every member of my family has done that this year. We don't get to. We are in the trenches of this life. It is hard, but we are content. Maybe instead of drowning everyday in substances and bitching that they can't do it, they should look at those around you that you admire. They say that we are so responsible, but our lives are busier than we let on. They don't hear about the fights for pants or teeth brushing. They don't know about the routine appointments to different therapists. They never hear me bitching that Puck works nights and we don't see each other often. Yet, they envy our lives. They don't know what we do. They really don't. We have the healthiest relationship, according to them. Could it be that we are the way we are because, despite how hard it is and the things we have to give up, we accepted the responsibility? The last time Puck saw her family, was when we left them. Yet, they can't manage a simple task like wash one person's dishes and wipe the counters without whining that they need a vacation. They are "too stressed out."
As far as caring for those whom they love, they should be putting in more of an effort. You don't know how long you have with them. To my family, who feels they do so much and can't possibly do more....We know grandma doesn't have long. So, stop putting in a half assed effort and give with your whole heart. You taught me that life isn't fair. It's not, but you play what is dealt to you. Follow your own advice. Despite the fact that our life doesn't really allow for the extra's, we manage it. So I suggest you figure it out. Otherwise, don't bitch at me that YOU can't do it. We do it every damn day!
Today Puck had to go over to my grandmother's and do a few things. It wasn't anything much. She did a little shopping, washed the dishes, and made things more accessible for my grandmother. It was the first time either of us has done this for her, due to living the autism life. Apparently, my family has been "taking turns" to "care" for my grandmother. That sounds nice, doesn't it? If only it were the way it sounded. When they say taking turns, they mean that my mother goes over there four days a week and the rest of the family the other two. Now, before you feel bad for my mother, she IS the only one without children home and she does live closer than the rest of us, but come on! Both of my aunts have older teens. They should be able to carry something more than two days between them. Now, as you may recall, I stated this was our first time. That is true, but we have been told on numerous occasions that our children tire my grandmother out. We have been running all over kingdom come and, honestly, with this life, it is hard to add something extra in. We have been wanting to do more to help, but we were so completely unprepared for what they consider "care".
Puck did the shopping, to which we found out that the last time she went, was when I took her. She brought it into the house and chatted for a minute. Though my grandmother was obviously in pain, she stated she was fine. Yeah, my ass! Thankfully, Puck sees these things and knew she was hurting. My grandmother was insistent that the milk would not fit in the mini fridge, to which Puck told her that "she would make it." She did get it in there, but it got us thinking. Why did nobody else do this? She really can't walk, let alone be climbing stairs. Once the groceries were away, Puck grabbed the dirty dishes to take them upstairs, as my mother says she does every night, to wash them.
As she got up the stairs, she found dishes all over the counters, the stove, and in the sink. The dishwasher had not been run and was full. There were coffee and food stains all over the counter. How is this "taking care" of grandma? It took Puck 15 minutes to get this cleaned up and straightened out. It wasn't a one day mess. This was a culmination of dirty that was being ignored. Yet, someone in the family is there once a day. I don't understand. Puck was horrified. We then realized that they have been bringing her ONE meal every day. I don't eat much, but that is just ridiculous. This woman is the paramount female in our family. She not only raised her kids, but had a major hand in raising their kids' too. A dismissal like this, no, a disregard for this woman and her home is terrible. Now, we only have one car. We live on a limited income. Yet, if we had the key and the means, we both have said we would be there everyday as a silent entity. We wouldn't want the family to know because, let's be realistic, they would stop coming. They would assume we would just do it, except they aren't really doing it.
Now, here Puck and I stand in judgement of those that have spent a lifetime telling us that we aren't doing it right. They all agree that we have grown up and are the most responsible family, but it is now clear to me why. While they have been repeating their mistakes, living in their bubbles, and judging every move that we make, we have been raising two children with autism. As time goes by, we get better at time keeping, appointments, hectic routines, and life in general. We try really hard not to repeat mistakes because, in all honesty, we learned long ago that if it doesn't work, it doesn't work. Yes, we have done some unconventional things. We don't always do it the way others would, but it works. We found a way to make it work. When it stops working, we find a different way. We don't go back. They have all slipped into bottles of one sort or another, to stew in the troubles they have and how hard life has gotten with this extra chore. my mother has been stressed to her max with getting a room ready for my grandmother after her surgery. Yet, in two weeks, I haven't spoken to her after five that she wasn't at least tipsy.
We don't drink. We don't take vacations. We don't have that luxury. We are going from midnight to midnight. There is always someone awake here. We run from start to forever, because there is no finish. We would love a vacation. We would love to go visit family on the opposite coast. We would love to have a weekend getaway, just us. Every member of my family has done that this year. We don't get to. We are in the trenches of this life. It is hard, but we are content. Maybe instead of drowning everyday in substances and bitching that they can't do it, they should look at those around you that you admire. They say that we are so responsible, but our lives are busier than we let on. They don't hear about the fights for pants or teeth brushing. They don't know about the routine appointments to different therapists. They never hear me bitching that Puck works nights and we don't see each other often. Yet, they envy our lives. They don't know what we do. They really don't. We have the healthiest relationship, according to them. Could it be that we are the way we are because, despite how hard it is and the things we have to give up, we accepted the responsibility? The last time Puck saw her family, was when we left them. Yet, they can't manage a simple task like wash one person's dishes and wipe the counters without whining that they need a vacation. They are "too stressed out."
As far as caring for those whom they love, they should be putting in more of an effort. You don't know how long you have with them. To my family, who feels they do so much and can't possibly do more....We know grandma doesn't have long. So, stop putting in a half assed effort and give with your whole heart. You taught me that life isn't fair. It's not, but you play what is dealt to you. Follow your own advice. Despite the fact that our life doesn't really allow for the extra's, we manage it. So I suggest you figure it out. Otherwise, don't bitch at me that YOU can't do it. We do it every damn day!
Wednesday, October 9, 2013
My Homework...
So, I am going to try and do what they suggested I do and just run a stream of thoughts out here without stopping. It was a good suggestion, as my life seems to be jumbled together, much like my thoughts. I feel sort of stupid doing it, especially in a blog, but I don't really write much anymore do to an injury, so you all get the benefit of this piece of advice. I have been attending therapy, both group and singular for parts of the crazy that is my life. I have tried to stay positive. Mostly, I have been able to do that, but some days are really so much harder than others. I am trying to deal with so many things at once. Due to the public nature of my blog, I will be likely editing some of what I write out, thus keeping my anonymity, but hopefully it still flows in a readable manner. Alright, so here goes.
Lately, the world has been spinning. I have been living in that person I was years ago, that can't do anything right. It is making the things I am trying to accomplish very hard. I am wanting desperately to grab hold of my life, but find that it is not something I have been able to do. I am dealing with my own personal demons, many of which are the reasons behind the counseling, but I have been dealing with stuff for the kids too. Both kids have hit that puberty stage, where they have suddenly gotten harder. Their meds are not working as they should and I have lost complete control. I am not sure how to gain it back. JJ has been stealing almost daily. It doesn't even seem to matter what it is anymore. It is like it has become a habit. Where he used to give excuses or try to hide it, he is now just throwing the word "whatever" around and genuinely seems to not care what it is doing to us all. I feel completely disregarded. On the best day, I feel like I am struggling to regain control. On the worst, I wonder why I even try. His attitude has gotten so terrible that I have entertained the idea of a home. Logistically, I can't do that, for many reasons, but it has crossed my mind.
I am so angry at myself for missing the psychiatrists' appointment today for the kids. I can't say for sure that it was my mistake, but it feels like it. I have been running and running and things are starting to fall through. I realize that. I also realize that I need to take better care of myself, though haven't figured out how best to do that. I am not eating right. I am not sleeping. I am just go, go, go. I need to stop for a minute and breathe. I need to look around and realize that I am not alone. I do have help in Puck. I just feel like sometimes, she does so much. I wonder if I asked too much of her when she signed on to help me raise these two. I know she would object, but I can't help but question it.
I meet with the advocate tomorrow. I am terrified to do that. It's like a last line of defense in this long ass battle with the district. I don't understand why it is so hard to get help for your kid, when it is obvious they need it. Even when presented with unfailing evidence, they turn a blind eye. What happens if my son does something that is jail worthy? What then? They don't know. They know it's possible, but they choose to ignore it and pursue the idea that it is all rainbows and sunshine. It's crap. I know they don't really realize what we do at home, but even when presented with a clear picture, they choose to interpret it as "my problem" instead of ours. We are raising these children together. How is it we can't find a common ground?
Like with SS and her teachers. I have been told she doesn't "look autistic". The teacher could not tell me what autism actually looked like, nor should she have been able to, because it never looks the same. Add in the fact that she is a girl, and there is a world of things these teachers don't know. SS has been up EVERY night in the kitchen. Her tests show that she has not metabolic issue, but she is up at 3 or 4 AM gathering food and hoarding it in her room. Often times, it is not something I would give her. Honestly, I worry that some night she is going to eat something she shouldn't and get sick. She has been blatantly ignoring us. When I say that, I mean we will tell her no and she will do it anyway, right there in front of us, all the why arguing why she should. Again, puberty and a med imbalance is likely to blame. I think that is why I cried this morning in the office. How could I screw up the most important appointment for them? It's still a blow.
Her teachers are stark raving mad. They refuse to acknowledge her autism and have been less than accommodating in all aspects of schooling. They make me feel two feet tall. I am the one teaching most of the subjects, but in their eyes, I know nothing of my child. She walked out of class the other day and handed me a five dollar bill. I asked the teacher where she got it. She said she didn't know. This woman has ten children in her two hour class. How does she not know? I asked her to give the money back to the student, if she found out which child it was. I then asked her what the deal with this "contest" my daughter keeps bringing up. Again, she didn't know. I wonder what she really does, if she can't keep tabs on ten kids in two hours. I could do that in my sleep. She is the "accredited" teacher, but I do all the teaching. I know my kid. Don't look at me like I shoved a pencil in your eye, when I ask you a question or tell you about something that may affect you.
The insistence that there be dates on every scrap of paper she turns in, absolutely irritates me. You see that the work is there. You, as a school, are adamant that it is not the day, but the weekly hours, that count. So, tell me why you require a date on everything. You said the date didn't matter. Now, I have to go back through over 40 school papers and date them, all because you are too lazy to look at the lesson plan that you made for me. I don't have anything else to do, really.
And don't even get me STARTED on the situation with my mother and grandmother. I don't even have words.
See what I mean. I ran all over with that. It's a pretty good look at where my thoughts are and where I have been lately. Add in my personal stuff, and you have one hell of a mess. I am pretty positive. I know that I have to go through these things to get to a settling place in my life, but damn the ride is bumpy. I will continue with all I have to do. I will attempt to remain positive. As far as caring for myself, well, I do have a concert coming up. I think I deserve that. I think we both deserve that. I need to be more mindful of the fact that what I go through, affects those around me. Puck is feeling it too. Years of feeling alone are hard to break, but I need to. So, we are going to this concert. We deserve it. It will be a good time to step back, breathe, and do something completely selfish for once. It will be good. I will be good. It will all be ok.
Lately, the world has been spinning. I have been living in that person I was years ago, that can't do anything right. It is making the things I am trying to accomplish very hard. I am wanting desperately to grab hold of my life, but find that it is not something I have been able to do. I am dealing with my own personal demons, many of which are the reasons behind the counseling, but I have been dealing with stuff for the kids too. Both kids have hit that puberty stage, where they have suddenly gotten harder. Their meds are not working as they should and I have lost complete control. I am not sure how to gain it back. JJ has been stealing almost daily. It doesn't even seem to matter what it is anymore. It is like it has become a habit. Where he used to give excuses or try to hide it, he is now just throwing the word "whatever" around and genuinely seems to not care what it is doing to us all. I feel completely disregarded. On the best day, I feel like I am struggling to regain control. On the worst, I wonder why I even try. His attitude has gotten so terrible that I have entertained the idea of a home. Logistically, I can't do that, for many reasons, but it has crossed my mind.
I am so angry at myself for missing the psychiatrists' appointment today for the kids. I can't say for sure that it was my mistake, but it feels like it. I have been running and running and things are starting to fall through. I realize that. I also realize that I need to take better care of myself, though haven't figured out how best to do that. I am not eating right. I am not sleeping. I am just go, go, go. I need to stop for a minute and breathe. I need to look around and realize that I am not alone. I do have help in Puck. I just feel like sometimes, she does so much. I wonder if I asked too much of her when she signed on to help me raise these two. I know she would object, but I can't help but question it.
I meet with the advocate tomorrow. I am terrified to do that. It's like a last line of defense in this long ass battle with the district. I don't understand why it is so hard to get help for your kid, when it is obvious they need it. Even when presented with unfailing evidence, they turn a blind eye. What happens if my son does something that is jail worthy? What then? They don't know. They know it's possible, but they choose to ignore it and pursue the idea that it is all rainbows and sunshine. It's crap. I know they don't really realize what we do at home, but even when presented with a clear picture, they choose to interpret it as "my problem" instead of ours. We are raising these children together. How is it we can't find a common ground?
Like with SS and her teachers. I have been told she doesn't "look autistic". The teacher could not tell me what autism actually looked like, nor should she have been able to, because it never looks the same. Add in the fact that she is a girl, and there is a world of things these teachers don't know. SS has been up EVERY night in the kitchen. Her tests show that she has not metabolic issue, but she is up at 3 or 4 AM gathering food and hoarding it in her room. Often times, it is not something I would give her. Honestly, I worry that some night she is going to eat something she shouldn't and get sick. She has been blatantly ignoring us. When I say that, I mean we will tell her no and she will do it anyway, right there in front of us, all the why arguing why she should. Again, puberty and a med imbalance is likely to blame. I think that is why I cried this morning in the office. How could I screw up the most important appointment for them? It's still a blow.
Her teachers are stark raving mad. They refuse to acknowledge her autism and have been less than accommodating in all aspects of schooling. They make me feel two feet tall. I am the one teaching most of the subjects, but in their eyes, I know nothing of my child. She walked out of class the other day and handed me a five dollar bill. I asked the teacher where she got it. She said she didn't know. This woman has ten children in her two hour class. How does she not know? I asked her to give the money back to the student, if she found out which child it was. I then asked her what the deal with this "contest" my daughter keeps bringing up. Again, she didn't know. I wonder what she really does, if she can't keep tabs on ten kids in two hours. I could do that in my sleep. She is the "accredited" teacher, but I do all the teaching. I know my kid. Don't look at me like I shoved a pencil in your eye, when I ask you a question or tell you about something that may affect you.
The insistence that there be dates on every scrap of paper she turns in, absolutely irritates me. You see that the work is there. You, as a school, are adamant that it is not the day, but the weekly hours, that count. So, tell me why you require a date on everything. You said the date didn't matter. Now, I have to go back through over 40 school papers and date them, all because you are too lazy to look at the lesson plan that you made for me. I don't have anything else to do, really.
And don't even get me STARTED on the situation with my mother and grandmother. I don't even have words.
See what I mean. I ran all over with that. It's a pretty good look at where my thoughts are and where I have been lately. Add in my personal stuff, and you have one hell of a mess. I am pretty positive. I know that I have to go through these things to get to a settling place in my life, but damn the ride is bumpy. I will continue with all I have to do. I will attempt to remain positive. As far as caring for myself, well, I do have a concert coming up. I think I deserve that. I think we both deserve that. I need to be more mindful of the fact that what I go through, affects those around me. Puck is feeling it too. Years of feeling alone are hard to break, but I need to. So, we are going to this concert. We deserve it. It will be a good time to step back, breathe, and do something completely selfish for once. It will be good. I will be good. It will all be ok.
Sunday, September 29, 2013
Here We Are Again...
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.
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.
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.
Saturday, August 31, 2013
Find yourself...
Have you ever had an important conversation with someone and all you can think is, "For heaven's sake, PLEASE listen to me!" That has been my week. It has been a week of hard decisions and hard realities. It has been joy and tears. I have struggled with strength and being honest with myself. I have searched further into my past that I block out and accepted things to be fact. I have stepped up and said I need help, loud enough that it is all I can think about. I told my mother things she should have known long ago. I have admitted that I am angry that she never asked, but accepted that I don't know that I want her to know. I have accepted that my past still rules so much of my present, and I have resolved to take it back. That is just my own struggles this week, not including the stress and issues of a school incident.
I am seeing a major theme amongst my online friends, but mostly the people I am friends with outside of this box. It is a very unsettling trend. So many are upset with how their home life, work, or situations with their children are, but few are stepping up and doing anything about it. Now, I am the queen of using excuses to stay in a safety zone, even if it is not the best place for me, but come on. I have been asked how to handle things, or how to proceed in situations, but more often than not, I feel like I am just paying lip service. I feel like I am not being taken seriously. Obviously, these people are coming to me because they know they can trust me. They know that I have either been there or that I know someone who has. They know that I will go out of my way to help and be comforting, but how far does that go? How many times am I going to repeat myself over the years before you start to realize that my answer isn't going to change? You don't seem to be hearing me in our private chat's so how about I put it out there loud and clear.
Let's start with the easy one. If you are unhappy with your job, be it a pay issue, a boredom issue, or a boss from hell, FIX IT! Don't ask me where you should apply. Don't tell me you are unhappy and then not do anything about it. Certainly don't tell me the same thing for a year. If your job is riding you into the ground, driving you to drink, or causing incredibly negative self images, leave it. It really is that simple. Oh, you would make a dollar less? Get a second job. (I know someone who is reading this and screaming at me to practice what I preach, but let me get it out. Baby steps and all of that.) Find a place that is less expensive to live. If your job has you so screwed up that you are drinking or purging that through purchases, then money isn't the issue you think it is. Yes, leaving a job you have had for years is hard, but what is harder? Is it harder to walk in there EVERY day and smile, or to imagine that you didn't have to fake it every damn day? Really think about that. Money can be made anywhere. Yes, I am aware that finding a job can be difficult, but if you are hardworking, responsible, and tenacious, it will come. The thing is, you have to go FIND it. You can't just sit there and hope it falls into your lap. You control your life. If you really are having negative thoughts, go see a psychiatrist, get the RIGHT meds, and maybe go on unemployment until the stink of evil bitch is purged from your system. Point blank, get off your ASS and find a job that isn't going to put you in the nuthouse.
Let's talk marriage. Anyone who has read my blog for any length of time, has at least a marginal idea of what I have seen. I have seen the pits of hell from a marriage and the tops of heaven in another. The things I have seen and done will haunt me for life. Don't let that be you. If you are unhappy in your marriage, be it abuse, getting married for the wrong reasons, or you just outgrew each other, change it. If you haven't tried counseling, do it. If you have gone to counseling and you still can't see eye to eye, maybe it's time to look at how you got to where you are. I am not an advocate of divorce. I actually believe in happily ever after. But, and that is a big ass BUT, sometimes that is not possible. There is someone out there that is your Home. I promise. If you, like I did, find yourself flirting with Danger because there really wasn't anything there anymore, examine that. Are you seeking what Danger is offering or are you just seeking comfort? Is it the feeling of being told you are beautiful and wanted again that has you where you are, or is it just Danger? I have been in both places. I have wanted to feel loved and I have found love, in doing just that; flirting with Danger. Both paths are hard, but understandable. Just make sure you are doing it for the right reasons. Make sure that if you are doing things that wouldn't seem fitting for your marriage, that you are ready for anything. Even the things we try to hide the most can come back to bite us in the ass. If you are taking abuse of any sort, RUN! Don't stop to think about all the reasons you should stay. There is no reason good enough for you or your children to take that. If you find, after examining yourself thoroughly, that you are just afraid, seek help. There are some amazing domestic violence shelters and groups out there. If you are already divorced and still dealing with the abuse, you still need to seek that. You need to seek a place where you aren't alone in it all. You need to know it wasn't you. You need to overcome the fear of the ex, step up, and say, "He/She does not own me anymore. I am free to make my own choices." Chances are, if you come from this situation, you are constantly questioning yourself. Don't do that. The reality is, you left and THAT was an amazing and brave choice, so you can't be doing everything wrong. If you find that you just don't know your spouse anymore, maybe you need a vacation. Maybe you need to relearn what it was that sparked in the first place. I believe in exercising all avenues before deciding on divorce, unless there is abuse. The bottom line here is this: if at the end of the proverbial day, you are still not happy in your union, make a change. That doesn't mean to run from the hard stuff. It doesn't mean you can just stop trying to communicate. It means do what you need to. Make your life something you are proud of, but do so in a way to limit damage to everyone. It does nobody any good if your children, or even your ex, are scarred for life.
And here we get to children. This is the most important and I leave it for last because it so closely relates to marriage. If you are staying in your marriage SOLELY for your children, you are wrong. What sort of example are you setting for them if they see you unhappy? Do you want your son or daughter to think it is perfectly acceptable to settle for something? Don't you want them to look at you and see how positive and happy your life is and strive to emulate it in the future? Your children are your legacy. You protect them, nurture them, and guide them into the person they will be. Children learn from what they see. That is the bottom line on staying for the children. You aren't helping them if that is your only reason. You are hurting them and stunting them with the misguided thought that a divorce would deprive them of something. What you are depriving them of now is the right to have happy parents. And don't think they don't notice. They do.
Children, in general, is a hard subject to write on. We all parent differently and we all have different kids. What we do affects them. It is our job to protect them. You don't like what the school is doing or something they said, TELL them. If they don't want to listen, MAKE them. If your children are in a dangerous situation,
get them out of it. I don't care if you have to sell your soul and cut off your nose! Your children should mean everything. I talk a lot about making yourself happy, but in the end, those of us with kids, find the most joy in our children. Protect that. I used to say that anyone who ever dared to hurt my children had better hope the police get them first. I stand by that. When our kids get harmful to themselves, no matter how much it hurts your soul, you get them help. No matter what, your kids should mean the world to you and you should protect them with everything. If that means making YOUR life a good one to emulate, do it. If it means doing things that make you sad or uncomfortable, do it. If the things you need to do for your kids frighten you, then you are probably in desperate need to do it.
Fact is, fear is a driving factor in nearly everything we do. The more fear, the more likely you are needing to make the change you are scared of, in my experience. It's like an avoidance spell out of a teen book. You want to do everything you can to avoid it. Fear is also a big f'ing scaredy cat! If you stand up and face it, it gets less scary. If you keep doing it, it gets easier. Stand strong. Seek your life. Life is not going to drop good things in your lap. You have to fight for those. It doesn't matter if you are fighting for a better work environment, a happier marriage, or for your kids. You have to fight for the good stuff. You might come out bloody and bruised, but you will come out stronger. Don't shut off and give in. Stand up. Stop being frustrated and angry all the time. If you walk around totally pissed all the time, Happy is going to avoid you. So, get out there and fix it!
I don't believe in quitting. I believe in furthering yourself. I believe in bettering yourself. I believe that we never stop learning and should always seek wisdom and knowledge from every situation. I believe that once your life aligns, you are still going to have to fight to keep it balanced. That is the nature of everything. Balance. Find your balance. Find your Happy. Find YOURSELF!
I am seeing a major theme amongst my online friends, but mostly the people I am friends with outside of this box. It is a very unsettling trend. So many are upset with how their home life, work, or situations with their children are, but few are stepping up and doing anything about it. Now, I am the queen of using excuses to stay in a safety zone, even if it is not the best place for me, but come on. I have been asked how to handle things, or how to proceed in situations, but more often than not, I feel like I am just paying lip service. I feel like I am not being taken seriously. Obviously, these people are coming to me because they know they can trust me. They know that I have either been there or that I know someone who has. They know that I will go out of my way to help and be comforting, but how far does that go? How many times am I going to repeat myself over the years before you start to realize that my answer isn't going to change? You don't seem to be hearing me in our private chat's so how about I put it out there loud and clear.
Let's start with the easy one. If you are unhappy with your job, be it a pay issue, a boredom issue, or a boss from hell, FIX IT! Don't ask me where you should apply. Don't tell me you are unhappy and then not do anything about it. Certainly don't tell me the same thing for a year. If your job is riding you into the ground, driving you to drink, or causing incredibly negative self images, leave it. It really is that simple. Oh, you would make a dollar less? Get a second job. (I know someone who is reading this and screaming at me to practice what I preach, but let me get it out. Baby steps and all of that.) Find a place that is less expensive to live. If your job has you so screwed up that you are drinking or purging that through purchases, then money isn't the issue you think it is. Yes, leaving a job you have had for years is hard, but what is harder? Is it harder to walk in there EVERY day and smile, or to imagine that you didn't have to fake it every damn day? Really think about that. Money can be made anywhere. Yes, I am aware that finding a job can be difficult, but if you are hardworking, responsible, and tenacious, it will come. The thing is, you have to go FIND it. You can't just sit there and hope it falls into your lap. You control your life. If you really are having negative thoughts, go see a psychiatrist, get the RIGHT meds, and maybe go on unemployment until the stink of evil bitch is purged from your system. Point blank, get off your ASS and find a job that isn't going to put you in the nuthouse.
Let's talk marriage. Anyone who has read my blog for any length of time, has at least a marginal idea of what I have seen. I have seen the pits of hell from a marriage and the tops of heaven in another. The things I have seen and done will haunt me for life. Don't let that be you. If you are unhappy in your marriage, be it abuse, getting married for the wrong reasons, or you just outgrew each other, change it. If you haven't tried counseling, do it. If you have gone to counseling and you still can't see eye to eye, maybe it's time to look at how you got to where you are. I am not an advocate of divorce. I actually believe in happily ever after. But, and that is a big ass BUT, sometimes that is not possible. There is someone out there that is your Home. I promise. If you, like I did, find yourself flirting with Danger because there really wasn't anything there anymore, examine that. Are you seeking what Danger is offering or are you just seeking comfort? Is it the feeling of being told you are beautiful and wanted again that has you where you are, or is it just Danger? I have been in both places. I have wanted to feel loved and I have found love, in doing just that; flirting with Danger. Both paths are hard, but understandable. Just make sure you are doing it for the right reasons. Make sure that if you are doing things that wouldn't seem fitting for your marriage, that you are ready for anything. Even the things we try to hide the most can come back to bite us in the ass. If you are taking abuse of any sort, RUN! Don't stop to think about all the reasons you should stay. There is no reason good enough for you or your children to take that. If you find, after examining yourself thoroughly, that you are just afraid, seek help. There are some amazing domestic violence shelters and groups out there. If you are already divorced and still dealing with the abuse, you still need to seek that. You need to seek a place where you aren't alone in it all. You need to know it wasn't you. You need to overcome the fear of the ex, step up, and say, "He/She does not own me anymore. I am free to make my own choices." Chances are, if you come from this situation, you are constantly questioning yourself. Don't do that. The reality is, you left and THAT was an amazing and brave choice, so you can't be doing everything wrong. If you find that you just don't know your spouse anymore, maybe you need a vacation. Maybe you need to relearn what it was that sparked in the first place. I believe in exercising all avenues before deciding on divorce, unless there is abuse. The bottom line here is this: if at the end of the proverbial day, you are still not happy in your union, make a change. That doesn't mean to run from the hard stuff. It doesn't mean you can just stop trying to communicate. It means do what you need to. Make your life something you are proud of, but do so in a way to limit damage to everyone. It does nobody any good if your children, or even your ex, are scarred for life.
And here we get to children. This is the most important and I leave it for last because it so closely relates to marriage. If you are staying in your marriage SOLELY for your children, you are wrong. What sort of example are you setting for them if they see you unhappy? Do you want your son or daughter to think it is perfectly acceptable to settle for something? Don't you want them to look at you and see how positive and happy your life is and strive to emulate it in the future? Your children are your legacy. You protect them, nurture them, and guide them into the person they will be. Children learn from what they see. That is the bottom line on staying for the children. You aren't helping them if that is your only reason. You are hurting them and stunting them with the misguided thought that a divorce would deprive them of something. What you are depriving them of now is the right to have happy parents. And don't think they don't notice. They do.
Children, in general, is a hard subject to write on. We all parent differently and we all have different kids. What we do affects them. It is our job to protect them. You don't like what the school is doing or something they said, TELL them. If they don't want to listen, MAKE them. If your children are in a dangerous situation,
get them out of it. I don't care if you have to sell your soul and cut off your nose! Your children should mean everything. I talk a lot about making yourself happy, but in the end, those of us with kids, find the most joy in our children. Protect that. I used to say that anyone who ever dared to hurt my children had better hope the police get them first. I stand by that. When our kids get harmful to themselves, no matter how much it hurts your soul, you get them help. No matter what, your kids should mean the world to you and you should protect them with everything. If that means making YOUR life a good one to emulate, do it. If it means doing things that make you sad or uncomfortable, do it. If the things you need to do for your kids frighten you, then you are probably in desperate need to do it.
Fact is, fear is a driving factor in nearly everything we do. The more fear, the more likely you are needing to make the change you are scared of, in my experience. It's like an avoidance spell out of a teen book. You want to do everything you can to avoid it. Fear is also a big f'ing scaredy cat! If you stand up and face it, it gets less scary. If you keep doing it, it gets easier. Stand strong. Seek your life. Life is not going to drop good things in your lap. You have to fight for those. It doesn't matter if you are fighting for a better work environment, a happier marriage, or for your kids. You have to fight for the good stuff. You might come out bloody and bruised, but you will come out stronger. Don't shut off and give in. Stand up. Stop being frustrated and angry all the time. If you walk around totally pissed all the time, Happy is going to avoid you. So, get out there and fix it!
I don't believe in quitting. I believe in furthering yourself. I believe in bettering yourself. I believe that we never stop learning and should always seek wisdom and knowledge from every situation. I believe that once your life aligns, you are still going to have to fight to keep it balanced. That is the nature of everything. Balance. Find your balance. Find your Happy. Find YOURSELF!
Saturday, August 24, 2013
The 6 Year Old NT girl, the 9 Year Old ASD girl, a Shared Birthday, and a Boy
As most of you know, we started camping this summer. What was supposed to be one trip, turned into every chance we got. We made friends with the camp host and his family. We met some of the locals that go often and their children. The host has a child (at least one) on the spectrum, so we never feel like we are imposing or that the children are misunderstood. We have turned into the campsite that all the kids play at. We bring our two, but we end up with at least three, more often five. We feed them sometimes. We play. It is sort of like a big family. So, when we had SS's birthday, that is what she wanted to do, go camping. So, we packed up the car with camping gear and presents and headed out.
We were blessed to get our normal spot, seeing as we got up there late. We got set up, but after the day we had had trying to get everything together, we were not in the best of moods. We set up the tent and promptly set around the fire to brood. Yeah, it was that kind of day. We made dinner with Weird Tree and set ourselves to bed. (Camping on a full moon was not our BEST idea.)
Friday we hiked all over kingdom come. We were all off the beaten track. We found sites for the local Native American tribe that were not on the protected site. We saw things I cannot begin to describe. It was just beautiful. I managed to get exactly three pictures before I ended up in the water, iPod first. Weird tree tried to help me up, but as he was holding his hand out, I was flipping over, further into the water, to get my iPod out and in his dry hands. It was touch and go for awhile, but my iPod survived after a thorough shaking and a night in a bag of saltines. Some of the locals we know came in with their daughter for the weekend. We had our typical ritual of hot dogs, grilled cheese, and s'mores for dinner and actually headed to bed early. The 5 hour hike was just a lot.
We got up this morning and it was finally SS's birthday. We dealt with all of the questions about when and time, but we finally couldn't hold it off any longer. We let her open her presents. Now, we got her things that served dual purposes. She got gifts that were fun, but also ones that the OT recommended her to have. The star gift was a Nerf Heartbreaker Crossbow. Yes, we did. Not five minutes after this thing is out of it's wrapper and I have shot it, all the kids come on over. We now have our two, the host's three, and the local's little girl. Guess what? It was that little girl's birthday too.
Now, the host has a son who is absolutely adorable. He is friendly and outgoing and just every inch boy. He is 6 years old. Now, what do you think happens when the NT girl, who is turning 6 today, and the ASD girl, who turned 9, like the same boy? Yeah, that happened. Unfortunately for the local girl, my daughter had an awesome crossbow. My daughter won, but it was not pretty.
Little girls can be mean. There is more than just words when little girls are competing over boys, even at that age. There is cutting tones, body language, and of course, who is the cooler girl. The local girl's parents had not yet shown her that she had any presents brought to camp, so she was already having trouble dealing. My girl won this time, but it was a huge reality check. I was not ready to see my daughter cat fight over a boy. I really wasn't. However, I am the mom that will let you try and work it out. We let them all go congregate at the host's site while we finished packing. When they headed back to go to the local girls' site, we reigned ours in and went swimming. On our way out, the host felt the need to inform us that our daughter and his son had "a thing" going on. Yeah, I didn't need to know that.
We tried to go swimming, but the temperature just didn't reach a tolerable level to brave the high mountain water. We tried though. Puck actually went in because SS said it was her birthday and that is what she wanted. I stood at the top, dry, and egged her on. Let's be honest, I was the only one who had been in the water the whole trip, someone had to suffer with me.
All in all, we had a great time. I was very sad to leave for the last time this year. I cannot wait until next year. We did get the host's cell number since our kids get on so well, so hopefully the year won't feel so long. I hope it doesn't. It's our place of peace and the winter is just not going to be the same without it.
We were blessed to get our normal spot, seeing as we got up there late. We got set up, but after the day we had had trying to get everything together, we were not in the best of moods. We set up the tent and promptly set around the fire to brood. Yeah, it was that kind of day. We made dinner with Weird Tree and set ourselves to bed. (Camping on a full moon was not our BEST idea.)
Friday we hiked all over kingdom come. We were all off the beaten track. We found sites for the local Native American tribe that were not on the protected site. We saw things I cannot begin to describe. It was just beautiful. I managed to get exactly three pictures before I ended up in the water, iPod first. Weird tree tried to help me up, but as he was holding his hand out, I was flipping over, further into the water, to get my iPod out and in his dry hands. It was touch and go for awhile, but my iPod survived after a thorough shaking and a night in a bag of saltines. Some of the locals we know came in with their daughter for the weekend. We had our typical ritual of hot dogs, grilled cheese, and s'mores for dinner and actually headed to bed early. The 5 hour hike was just a lot.
We got up this morning and it was finally SS's birthday. We dealt with all of the questions about when and time, but we finally couldn't hold it off any longer. We let her open her presents. Now, we got her things that served dual purposes. She got gifts that were fun, but also ones that the OT recommended her to have. The star gift was a Nerf Heartbreaker Crossbow. Yes, we did. Not five minutes after this thing is out of it's wrapper and I have shot it, all the kids come on over. We now have our two, the host's three, and the local's little girl. Guess what? It was that little girl's birthday too.
Now, the host has a son who is absolutely adorable. He is friendly and outgoing and just every inch boy. He is 6 years old. Now, what do you think happens when the NT girl, who is turning 6 today, and the ASD girl, who turned 9, like the same boy? Yeah, that happened. Unfortunately for the local girl, my daughter had an awesome crossbow. My daughter won, but it was not pretty.
Little girls can be mean. There is more than just words when little girls are competing over boys, even at that age. There is cutting tones, body language, and of course, who is the cooler girl. The local girl's parents had not yet shown her that she had any presents brought to camp, so she was already having trouble dealing. My girl won this time, but it was a huge reality check. I was not ready to see my daughter cat fight over a boy. I really wasn't. However, I am the mom that will let you try and work it out. We let them all go congregate at the host's site while we finished packing. When they headed back to go to the local girls' site, we reigned ours in and went swimming. On our way out, the host felt the need to inform us that our daughter and his son had "a thing" going on. Yeah, I didn't need to know that.
We tried to go swimming, but the temperature just didn't reach a tolerable level to brave the high mountain water. We tried though. Puck actually went in because SS said it was her birthday and that is what she wanted. I stood at the top, dry, and egged her on. Let's be honest, I was the only one who had been in the water the whole trip, someone had to suffer with me.
All in all, we had a great time. I was very sad to leave for the last time this year. I cannot wait until next year. We did get the host's cell number since our kids get on so well, so hopefully the year won't feel so long. I hope it doesn't. It's our place of peace and the winter is just not going to be the same without it.
Tuesday, August 20, 2013
Seeing yourself through my eyes...
Sometimes, I forget that we, as humans, need validations of love. I am not very good with my words when I am trying to express something to someone. I can write until I am blue in the face, but verbally speaking from the heart is nearly impossible for me. I have intimacy issues. I forget that those personal issues can affect my wife sometimes. I don't think I tell her I love her enough. I sometimes wonder if she knows what she truly means to me. I wonder if she knows all that she represents in my life. I feel like I need to tell her, but I always lose the words. I decided tonight, that I would let her know what she means to me. It may come in a round about way. It may go out to the world, but if it means that she gets the chance to see herself the way that I see her, it is worth it.
She is the first morning light on my face. That pleasant warmth that is so encompassing and peaceful. She is the breeze that blows on an early summer day, that makes you feel like the world has stopped. When I look at her, I see the most amazing person I have ever met. She is strong when she needs to be, but she is just the right amount of fragile. She puts the stars in heaven to shame. I could wax and wane about her beauty all day. She has these eyes that look straight into you. They are absolutely soul touching eyes. When she looks at me, my heart leaps that she loves me as she does. It breaks when I hurt her feelings by not being open or when I get frustrated and can't express myself, resulting in yelling.
She has a way about her. It's like she glows. There is a way that she stands, just as she is walking out the door, that takes my breath away. She takes my breath away. When she smiles, I can forget how hard life can be sometimes. She is all encompassing in my life. I truly do not know what I would do without her. My soul would be lost. She owns my soul, not just my heart. She is my everything.
Most importantly, she is my home. You could dump me in the middle of nowhere, with nothing but my kids and her and it would be home. She makes me a better person. She makes me want to BE a better person. I am constantly in awe that she chose me, and constantly in fear that she is going to realize I am not good enough for her. To say I love her does not begin to cover it. I don't have the right words to ever express how deeply I love her. I don't think I will ever be able to really convey what she means to me. She means everything. She holds everything. She binds everything. She makes me feel safe, where I have never felt safe before. To me, she is more than a beautiful girl that I was lucky enough to marry. Her beauty is something to behold, but for me, she just means so much more. I don't think I tell her that enough.
Puck, I love you. I am sorry I don't say it often enough. I need to make a better effort to do so. You deserve it. While I may not have ever done anything to deserve you, you deserve to see yourself through my eyes. You are my shining star in a world that is so often bleak and hopeless. You make me hope for a better world through showing our family how to be a better family. You are an amazing woman. I am lucky to know you, let alone to be married to you. I love you.
She is the first morning light on my face. That pleasant warmth that is so encompassing and peaceful. She is the breeze that blows on an early summer day, that makes you feel like the world has stopped. When I look at her, I see the most amazing person I have ever met. She is strong when she needs to be, but she is just the right amount of fragile. She puts the stars in heaven to shame. I could wax and wane about her beauty all day. She has these eyes that look straight into you. They are absolutely soul touching eyes. When she looks at me, my heart leaps that she loves me as she does. It breaks when I hurt her feelings by not being open or when I get frustrated and can't express myself, resulting in yelling.
She has a way about her. It's like she glows. There is a way that she stands, just as she is walking out the door, that takes my breath away. She takes my breath away. When she smiles, I can forget how hard life can be sometimes. She is all encompassing in my life. I truly do not know what I would do without her. My soul would be lost. She owns my soul, not just my heart. She is my everything.
Most importantly, she is my home. You could dump me in the middle of nowhere, with nothing but my kids and her and it would be home. She makes me a better person. She makes me want to BE a better person. I am constantly in awe that she chose me, and constantly in fear that she is going to realize I am not good enough for her. To say I love her does not begin to cover it. I don't have the right words to ever express how deeply I love her. I don't think I will ever be able to really convey what she means to me. She means everything. She holds everything. She binds everything. She makes me feel safe, where I have never felt safe before. To me, she is more than a beautiful girl that I was lucky enough to marry. Her beauty is something to behold, but for me, she just means so much more. I don't think I tell her that enough.
Puck, I love you. I am sorry I don't say it often enough. I need to make a better effort to do so. You deserve it. While I may not have ever done anything to deserve you, you deserve to see yourself through my eyes. You are my shining star in a world that is so often bleak and hopeless. You make me hope for a better world through showing our family how to be a better family. You are an amazing woman. I am lucky to know you, let alone to be married to you. I love you.
Monday, August 19, 2013
SS's Teacher Letter
As you all may know, I had to fill out a "get to know my child" form for JJ recently. I am going to replicate that for SS this year in hopes that the teacher, whom is new to her, will get a better understanding of her as well. Here is the opportunity for you all to get to know a little about how different my two children are and more about them.
1. What do you feel are your child's greatest needs in school?
I believe that SS needs, above all, acceptance and understanding. She is a very sensitive little girl and often misunderstood. She often gets overwhelmed when too many things are going on, due to her being on the autism spectrum. She was originally diagnosed with PDD-NOS, but is currently undergoing an updated diagnoses. Loud noises or chaos can often cause her to have a difficulty with understanding. In particular, her audio processing causes her to hear, or not hear, things in a distorted manner. When she becomes overwhelmed, she will cry. Often she needs a little reassuring and space to gather herself back from the meltdown. She will do better at the front of the class. She is a generally happy child, but she tends to fall prey to bullies. She will not tell you, for fear of losing any friends she might make. It is why she is attending your school this year. She has a very difficult time sitting or standing still. She stims almost constantly. She hums almost all the time, though is not aware of it. It is her way of dealing with a possibly overwhelming situation. She is a solitary player, though will interact with other students, but almost never the same ones. She does not make lasting friendships.
2.What do you feel needs to be emphasized the most for your child during the class this year?
SS loves science. She will be intent on learning and you should have no trouble engaging her in this subject. Writing is more difficult for her. I don't know if you got her state testing results for last year, but her reading fluency is above a 5th grade level. However, her writing composition is far below standard. She has difficulty, both with handwriting and with composition in general. Even giving an oral story, she tends to lose track of where she was at and needs to start over. Having to write it out, is much harder for her. She self edits and is very fearful of being considered "stupid', though we are not sure whether that is her own fear or a result of the extensive bullying she endured last year. She will definitely need help with her writing skills.
3. After looking at your child's school work and observing him/her at work at home, what suggestions do you have for your child's work habits?
SS does not have a current IEP in place, though we are intent on pursuing one. If possible, the ability to move while learning will help. Not walking around, but an exercise ball to sit on, or something to keep her in constant motion. She does need repetition in her daily work. She is a hands on child. She learns better with visual aids. If she starts to get overwhelmed with too much information, she will often claim she does not feel well or that she is tired. These are avoidance techniques to draw attention away from the fact that she may not understand what you are meaning. She needs clear and concise instructions. She has trouble with multiple step instructions unless given a list or schedule. She does not do well with sudden change without warning.
4. Are there particular interests, strengths, or weaknesses that I should be sensitive to in designing a program for your child?
Interests or strengths:
SS is a very loving child. She seeks and craves positive attention. She will strive to do her best while in class. She will try her hardest to make friendships, though due to her multiple neurological differences, she will most likely struggle with it. She has a craving for knowledge and will ask many questions. She is a child that will question and seek answers.
Weaknesses:
SS has trouble with writing, as stated above. She gets frustrated with herself if she cannot do something correctly, especially if she has tried numerous times. She has trouble with letters, numbers, spelling, and handwriting. She will not stand up for herself, for the most part, in peer conflict. She does tend to play independently, often in a manner that is not considered typical for a child her age. She is very smart, but her emotional age ranges from 4-7 on a normal basis. Though she strives to be a good student, and mostly succeeds, she finds herself on the outside of social circles. Other than writing, she does not hold many academic weaknesses. We will know more when her full evaluation is done.
5. Is there anything that you would like for me to know about your child that is not covered in the other questions?
As stated, she does have a form of high functioning autism. She is normally an easy going child, but if she should begin to cry uncontrollably and is inconsolable, please do not hesitate to call or email me. As of this moment, we are waiting for several medical appointments and evaluations. I don't have all the answers, but I am seeking them for her. I find that keeping an open and honest relationship with her teacher makes it easier for her in the long run. It allows her to have her education addressed from both home and school. It also helps to collaborate so that, should a situation arise, we are better able to understand her needs. Until an IEP is in place, we are all she has.
Well, folks. There you go. There is how her letter will go in. She is harder for me because we don't really know what is going on with her. Hopefully, one day we will, but until then, we need to make sure the pathway to communication is open. We need to be communicating and doing all we can, in collaboration with the teachers.
1. What do you feel are your child's greatest needs in school?
I believe that SS needs, above all, acceptance and understanding. She is a very sensitive little girl and often misunderstood. She often gets overwhelmed when too many things are going on, due to her being on the autism spectrum. She was originally diagnosed with PDD-NOS, but is currently undergoing an updated diagnoses. Loud noises or chaos can often cause her to have a difficulty with understanding. In particular, her audio processing causes her to hear, or not hear, things in a distorted manner. When she becomes overwhelmed, she will cry. Often she needs a little reassuring and space to gather herself back from the meltdown. She will do better at the front of the class. She is a generally happy child, but she tends to fall prey to bullies. She will not tell you, for fear of losing any friends she might make. It is why she is attending your school this year. She has a very difficult time sitting or standing still. She stims almost constantly. She hums almost all the time, though is not aware of it. It is her way of dealing with a possibly overwhelming situation. She is a solitary player, though will interact with other students, but almost never the same ones. She does not make lasting friendships.
2.What do you feel needs to be emphasized the most for your child during the class this year?
SS loves science. She will be intent on learning and you should have no trouble engaging her in this subject. Writing is more difficult for her. I don't know if you got her state testing results for last year, but her reading fluency is above a 5th grade level. However, her writing composition is far below standard. She has difficulty, both with handwriting and with composition in general. Even giving an oral story, she tends to lose track of where she was at and needs to start over. Having to write it out, is much harder for her. She self edits and is very fearful of being considered "stupid', though we are not sure whether that is her own fear or a result of the extensive bullying she endured last year. She will definitely need help with her writing skills.
3. After looking at your child's school work and observing him/her at work at home, what suggestions do you have for your child's work habits?
SS does not have a current IEP in place, though we are intent on pursuing one. If possible, the ability to move while learning will help. Not walking around, but an exercise ball to sit on, or something to keep her in constant motion. She does need repetition in her daily work. She is a hands on child. She learns better with visual aids. If she starts to get overwhelmed with too much information, she will often claim she does not feel well or that she is tired. These are avoidance techniques to draw attention away from the fact that she may not understand what you are meaning. She needs clear and concise instructions. She has trouble with multiple step instructions unless given a list or schedule. She does not do well with sudden change without warning.
4. Are there particular interests, strengths, or weaknesses that I should be sensitive to in designing a program for your child?
Interests or strengths:
SS is a very loving child. She seeks and craves positive attention. She will strive to do her best while in class. She will try her hardest to make friendships, though due to her multiple neurological differences, she will most likely struggle with it. She has a craving for knowledge and will ask many questions. She is a child that will question and seek answers.
Weaknesses:
SS has trouble with writing, as stated above. She gets frustrated with herself if she cannot do something correctly, especially if she has tried numerous times. She has trouble with letters, numbers, spelling, and handwriting. She will not stand up for herself, for the most part, in peer conflict. She does tend to play independently, often in a manner that is not considered typical for a child her age. She is very smart, but her emotional age ranges from 4-7 on a normal basis. Though she strives to be a good student, and mostly succeeds, she finds herself on the outside of social circles. Other than writing, she does not hold many academic weaknesses. We will know more when her full evaluation is done.
5. Is there anything that you would like for me to know about your child that is not covered in the other questions?
As stated, she does have a form of high functioning autism. She is normally an easy going child, but if she should begin to cry uncontrollably and is inconsolable, please do not hesitate to call or email me. As of this moment, we are waiting for several medical appointments and evaluations. I don't have all the answers, but I am seeking them for her. I find that keeping an open and honest relationship with her teacher makes it easier for her in the long run. It allows her to have her education addressed from both home and school. It also helps to collaborate so that, should a situation arise, we are better able to understand her needs. Until an IEP is in place, we are all she has.
Well, folks. There you go. There is how her letter will go in. She is harder for me because we don't really know what is going on with her. Hopefully, one day we will, but until then, we need to make sure the pathway to communication is open. We need to be communicating and doing all we can, in collaboration with the teachers.
Friday, August 16, 2013
Don't "Recommend" Things to Me....Ever
Last night when I opened my teacher's manual for SS's math, I was hit with major anxiety. The curriculum isn't hard, but it also is something I am not familiar with. I skimmed it and decided that even though it was not the way I was used to teaching, it could be a very good thing for her. So, I opened the other ridiculously large binder that has the instructions on how to use the materials and get set up. Guess what! The package didn't come with any of the cut outs or needed things for the MAIN teaching tool. Normally, I would have just said fine and called the county to get the materials, but at this point, I was just irritated. I seem to always be irritated with them.
They switched teachers on me again this year via email, no less. They are always complaining that I don't teach exactly the same way that they would. I add too much. I don't run a traditional classroom setting. I teach more lessons outside than in, therefore creating less of a paper trail. I get that it is hard to monitor what a child is learning without a paper trail, but I think that the experiences they get out of it are far more than a book could ever teach. They never call to let me know if something is going on, despite knowing both kids have ASD. They just let it ride. It makes me so frustrated, and honestly, I start doing things to irritate them on purpose.
So, back to this board that I should have all the materials for. I don't. I am looking at this lay out and thinking, "That is a lot of work." Then I looked at the boring thing again. It's all primary colored and honestly, it has no personality. It literally looks like it walked out of the classroom. Well, I don't have a classroom. I have my house. I don't want to pin it to a wall. I want to teach wherever the lesson takes me. This board is supposed to be mounted to the wall and used like some standard school board would. Well, I don't do standard school. If I wanted standard school, then I would have put her back in that joke they call a school this year. So, what do I do? Take a trip to Walmart.
Going to that pit is never good, but on the week school starts, the chances of jail time increase exponentially. I did get in and out in a decent amount of time. I didn't kill anybody. I also came out with kick ass materials and a totally different idea of what this board should look like and how it should function. I maintained the integrity of it, kept all the mandatory items, and threw out the "recommendations" of the curriculum. Yeah, I did that. I also created a crap load of work to do, but in keeping with my traditions of schooling, it was so worth. it. Plus, it will really give the new teacher a good look at what and WHO she is dealing with. I won't teach it the way you want if it won't get through. I will teach it the way my kid will get it. I will be stupid and make horrid jokes, just to get the point across.
The recommended board is 13 ft. long. NO! My board is at best a little over 3 feet. It is supposed to span a wall and hang there, all boring like. NO! My board is tri-fold, portable, and easy to reach. They wanted a light blue background with yellow accents, like a standard school board should be. NO! I bought a black board and neon blue trimming. They wanted all calm and peaceful coloring for the details. NOPE! I totally used every bright color I could find, while avoiding primary colors as much as possible. I HAND MADE every component of that board, including a number chart, multiplication charts, and a clock, to name a few. It took me hours. I laminated all the stuff we should need to write on. I bought clear polish to prime the back board for anything stuck to it so that I can re use it again if I have to. I went above and beyond to create something for my child that wasn't boring and could be used to teach in a way SHE will learn. Is it going to piss off the teacher? Probably. If that happens, am I going to laugh? Absolutely. Is it in anyway missing anything that it was required to have? No, it isn't. Will it help my child better than the "recommended board?" Yes, it will.
I guess the lesson here is, if you are going to continue to push my and my child's buttons with your constant changes and lack of understanding, then I am going to hit you where it hurts you the most. I will proudly walk in there this week, at the new time, with the new teacher, carrying this thing. I will then politely ask if this is what they had in mind. Some of that is making sure I got it right, but the rest, pure entertainment value on my part. I am not the monkey in your pocket. I will not be a puppet that you can pull strings on. I will teach the assigned materials to their full extent, but you will not tell me HOW I teach them. You will sit back and watch magic unfold before your eyes. You may be the teacher, but I am the parent. I know my kid. My kid knows me. If you intend to survive this school year with your sanity in tact, I suggest you get to know us both. Otherwise, it is going to be a very rough year for you.
They switched teachers on me again this year via email, no less. They are always complaining that I don't teach exactly the same way that they would. I add too much. I don't run a traditional classroom setting. I teach more lessons outside than in, therefore creating less of a paper trail. I get that it is hard to monitor what a child is learning without a paper trail, but I think that the experiences they get out of it are far more than a book could ever teach. They never call to let me know if something is going on, despite knowing both kids have ASD. They just let it ride. It makes me so frustrated, and honestly, I start doing things to irritate them on purpose.
So, back to this board that I should have all the materials for. I don't. I am looking at this lay out and thinking, "That is a lot of work." Then I looked at the boring thing again. It's all primary colored and honestly, it has no personality. It literally looks like it walked out of the classroom. Well, I don't have a classroom. I have my house. I don't want to pin it to a wall. I want to teach wherever the lesson takes me. This board is supposed to be mounted to the wall and used like some standard school board would. Well, I don't do standard school. If I wanted standard school, then I would have put her back in that joke they call a school this year. So, what do I do? Take a trip to Walmart.
Going to that pit is never good, but on the week school starts, the chances of jail time increase exponentially. I did get in and out in a decent amount of time. I didn't kill anybody. I also came out with kick ass materials and a totally different idea of what this board should look like and how it should function. I maintained the integrity of it, kept all the mandatory items, and threw out the "recommendations" of the curriculum. Yeah, I did that. I also created a crap load of work to do, but in keeping with my traditions of schooling, it was so worth. it. Plus, it will really give the new teacher a good look at what and WHO she is dealing with. I won't teach it the way you want if it won't get through. I will teach it the way my kid will get it. I will be stupid and make horrid jokes, just to get the point across.
The recommended board is 13 ft. long. NO! My board is at best a little over 3 feet. It is supposed to span a wall and hang there, all boring like. NO! My board is tri-fold, portable, and easy to reach. They wanted a light blue background with yellow accents, like a standard school board should be. NO! I bought a black board and neon blue trimming. They wanted all calm and peaceful coloring for the details. NOPE! I totally used every bright color I could find, while avoiding primary colors as much as possible. I HAND MADE every component of that board, including a number chart, multiplication charts, and a clock, to name a few. It took me hours. I laminated all the stuff we should need to write on. I bought clear polish to prime the back board for anything stuck to it so that I can re use it again if I have to. I went above and beyond to create something for my child that wasn't boring and could be used to teach in a way SHE will learn. Is it going to piss off the teacher? Probably. If that happens, am I going to laugh? Absolutely. Is it in anyway missing anything that it was required to have? No, it isn't. Will it help my child better than the "recommended board?" Yes, it will.
I guess the lesson here is, if you are going to continue to push my and my child's buttons with your constant changes and lack of understanding, then I am going to hit you where it hurts you the most. I will proudly walk in there this week, at the new time, with the new teacher, carrying this thing. I will then politely ask if this is what they had in mind. Some of that is making sure I got it right, but the rest, pure entertainment value on my part. I am not the monkey in your pocket. I will not be a puppet that you can pull strings on. I will teach the assigned materials to their full extent, but you will not tell me HOW I teach them. You will sit back and watch magic unfold before your eyes. You may be the teacher, but I am the parent. I know my kid. My kid knows me. If you intend to survive this school year with your sanity in tact, I suggest you get to know us both. Otherwise, it is going to be a very rough year for you.
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