Stick a Fork in Me
Warning: The following is venting. I don't want to talk about it outside of this post. In fact, I may turn my comments off. If I do not vent, my head will explode like one of Gallagher's watermelons. This remains my online journal, and I have never nor will I ever keep anything from it that comes to my fingers as I type. If you feel like calling me or e-mailing me, please make sure you have a good diet cocktail recipe or hilarious joke ready. I love all of you. I'll be just fine. And thanks.
I refuse to lie to you. The last few days have been pure hell on earth. In fact, I am crying at this very moment, so you will have to excuse a possible lapse in my writing ability. We are snowed in today and have been all week. This will be at least the fourth day of school Erik has missed because of weather-related decisions that people living here for an entire eight minutes have made. Has anybody seen snow before or what? In fact, our city already spent the money allotted for snow removal this year on other things because we haven't had snow for a couple years, so they assumed we would not again this year. Freaking brilliant. Go home, you posers. All of you.
I am seeing some very disturbing things happening in terms of Erik's behavior. He is frustrated at being snowbound and today asked to leave the house, specifically in my car, so we could see my parents. I had to tell him no but that this might be possible tomorrow. I have been punished for this all day. I have been kicked in the stomach. I have been slapped. I have been pinched. I have been yelled at. He has thrown food that he likes all over the floor. He has destroyed his room. He has refused to do anything I have asked him to do. I had to hold him down kicking and screaming to get clothes on him and brush his teeth. He has again refused the things he loves just for the simple pleasure of telling me no. There is nothing I can do for him except take him to see anyone besides me, and he has made that very clear.
You know, this wouldn't be so terribly bad if it didn't happen hour after hour, day after day this week, but it has, and I am at officially at the end of my rope. I have read in the resources I have that this can be classified as typical WS behavior and that if I give Erik slack in terms of his outbursts that he will be "socially rejected" in the future (as if he isn't already, anyway). No pressure. In fact, I have read that a variety of studies have reported that 52% to 85% of WS children are classified as "potentially disturbed," although I am guessing there is another more politically correct term now. I have been warned about a "low tolerance for frustration," and I can see that very clearly now. I try to do the correct things as a mother, treating Erik like I would any other child and focusing on the positive, but I'm certainly not perfect, especially in this kind of uncharted territory. What sucks is that no matter how I respond to him, he continues the same behavior--kicking, slapping, and growling, punishing himself by refusing things he enjoys in order to hurt my feelings, although I try not to let it show. He yells all of the things I have said at himself within earshot and even seems to come up with things I have never said at all (Stop it! Right now! Don't touch that! Go to sleep! Don't do that!). All are negative things, despite the fact he consistently gets praise and love daily. I tell myself that I need to continue being consistent in love and discipline, even though it doesn't seem to be working at the moment, hoping that it will eventually set into his brain that I am not weak or kidding. But, God, I feel so weak. There are weeks where I have moments alone in which I find myself looking at the ceiling or the sky and saying, "PLEASE HELP ME!"
What behavior is "normal" and what behavior stems from WS? I have learned that it is impossible to find much that isn't affected by WS in some way. The low tolerance for frustration. The impulsivity. The anger. I have been told by other parents that what Erik is doing is completely normal, yet in my eyes it has an underlying flavor that is DEFINITELY NOT NORMAL. This is also completely new in Erik's personality when there was no hint of it before. Of course, he doesn't do any these things to this degree unless we are alone, so I suppose most people think I am either nuts or full of shit. I heard on the news today that Britney Spears was held on a 5150 at a psych ward, and I actually felt myself drift into a jealous little daydream. I can't help but remember when my concerns were dismissed by everybody and their dog when Erik was born, including his doctor, when I knew something was terribly wrong. Oh sure, he failed numerous hearing tests, screamed all of the time, and never smiled, but he was just colicky. There are actually people who have admitted to me that they initially doubted my ability as a mother and wondered why I couldn't hack it. I have heard this from several people, and I love their honesty (and their typical children). However, my heart hurts more than just a little bit when I hear this.
I just know that when I was a child I would never walk up to either of my parents and pinch them or slap them on the back of the head as they sat in a chair. Hearing stories from the parents of older children with WS, I relate to everything they are saying. I just know I'm not nuts.
Today I tried so hard. We read books, most of which Erik insisted he disliked and wrestled with me in order to close, destroying some of them in the process, finger painted, played with water in the kitchen sink, and made a sorry attempt to play with toys, most of which he has no interest in at all. He made it quite clear that absolutely nothing I did or tried was acceptable to him or made him happy, throwing ugly fits all the way. What makes this worse is the fact that he does not seem to enjoy typical things, so I have to think outside the box. There isn't much outside the box at the moment. Erik, I'm trying so hard, baby, but I can only do so much. I'm sorry.
Yeah, yeah, I know. Perfectly normal. Typical childhood behavior. Late terrible 2s. Ha ha. Oh, I am in for it now. Oh, yes, I have heard it all. I'll certainly try to deal with it like most mothers. I'll get right on that and try to nut up like the rest of the women around me do. Oh, and can someone tell me what I am supposed to say when I am out with a group of women, they are bragging about their children, and I feel like disappearing into the floor because I don't know how to talk about my own kid without making anyone feel uncomfortable? Yeah, the last time I tried to talk about Erik and how amazing he was, I got this: "That's so sad." I can't even talk about my own kid.
Oh yeah. I almost forgot.
Still no phone call from church. I'm not finding comfort in much of anything associated with religion anymore. After this week, I probably get to tell the church that I once loved, where I learned Bible verses as a child, where I sat in a pew with my folks over the years, where I was baptized, and where I was married at age 30, to go fuck itself with great gusto. I suppose it's time. After all, I reached out for help just a mere two years ago.
I refuse to lie to you. The last few days have been pure hell on earth. In fact, I am crying at this very moment, so you will have to excuse a possible lapse in my writing ability. We are snowed in today and have been all week. This will be at least the fourth day of school Erik has missed because of weather-related decisions that people living here for an entire eight minutes have made. Has anybody seen snow before or what? In fact, our city already spent the money allotted for snow removal this year on other things because we haven't had snow for a couple years, so they assumed we would not again this year. Freaking brilliant. Go home, you posers. All of you.
I am seeing some very disturbing things happening in terms of Erik's behavior. He is frustrated at being snowbound and today asked to leave the house, specifically in my car, so we could see my parents. I had to tell him no but that this might be possible tomorrow. I have been punished for this all day. I have been kicked in the stomach. I have been slapped. I have been pinched. I have been yelled at. He has thrown food that he likes all over the floor. He has destroyed his room. He has refused to do anything I have asked him to do. I had to hold him down kicking and screaming to get clothes on him and brush his teeth. He has again refused the things he loves just for the simple pleasure of telling me no. There is nothing I can do for him except take him to see anyone besides me, and he has made that very clear.
You know, this wouldn't be so terribly bad if it didn't happen hour after hour, day after day this week, but it has, and I am at officially at the end of my rope. I have read in the resources I have that this can be classified as typical WS behavior and that if I give Erik slack in terms of his outbursts that he will be "socially rejected" in the future (as if he isn't already, anyway). No pressure. In fact, I have read that a variety of studies have reported that 52% to 85% of WS children are classified as "potentially disturbed," although I am guessing there is another more politically correct term now. I have been warned about a "low tolerance for frustration," and I can see that very clearly now. I try to do the correct things as a mother, treating Erik like I would any other child and focusing on the positive, but I'm certainly not perfect, especially in this kind of uncharted territory. What sucks is that no matter how I respond to him, he continues the same behavior--kicking, slapping, and growling, punishing himself by refusing things he enjoys in order to hurt my feelings, although I try not to let it show. He yells all of the things I have said at himself within earshot and even seems to come up with things I have never said at all (Stop it! Right now! Don't touch that! Go to sleep! Don't do that!). All are negative things, despite the fact he consistently gets praise and love daily. I tell myself that I need to continue being consistent in love and discipline, even though it doesn't seem to be working at the moment, hoping that it will eventually set into his brain that I am not weak or kidding. But, God, I feel so weak. There are weeks where I have moments alone in which I find myself looking at the ceiling or the sky and saying, "PLEASE HELP ME!"
What behavior is "normal" and what behavior stems from WS? I have learned that it is impossible to find much that isn't affected by WS in some way. The low tolerance for frustration. The impulsivity. The anger. I have been told by other parents that what Erik is doing is completely normal, yet in my eyes it has an underlying flavor that is DEFINITELY NOT NORMAL. This is also completely new in Erik's personality when there was no hint of it before. Of course, he doesn't do any these things to this degree unless we are alone, so I suppose most people think I am either nuts or full of shit. I heard on the news today that Britney Spears was held on a 5150 at a psych ward, and I actually felt myself drift into a jealous little daydream. I can't help but remember when my concerns were dismissed by everybody and their dog when Erik was born, including his doctor, when I knew something was terribly wrong. Oh sure, he failed numerous hearing tests, screamed all of the time, and never smiled, but he was just colicky. There are actually people who have admitted to me that they initially doubted my ability as a mother and wondered why I couldn't hack it. I have heard this from several people, and I love their honesty (and their typical children). However, my heart hurts more than just a little bit when I hear this.
I just know that when I was a child I would never walk up to either of my parents and pinch them or slap them on the back of the head as they sat in a chair. Hearing stories from the parents of older children with WS, I relate to everything they are saying. I just know I'm not nuts.
Today I tried so hard. We read books, most of which Erik insisted he disliked and wrestled with me in order to close, destroying some of them in the process, finger painted, played with water in the kitchen sink, and made a sorry attempt to play with toys, most of which he has no interest in at all. He made it quite clear that absolutely nothing I did or tried was acceptable to him or made him happy, throwing ugly fits all the way. What makes this worse is the fact that he does not seem to enjoy typical things, so I have to think outside the box. There isn't much outside the box at the moment. Erik, I'm trying so hard, baby, but I can only do so much. I'm sorry.
Yeah, yeah, I know. Perfectly normal. Typical childhood behavior. Late terrible 2s. Ha ha. Oh, I am in for it now. Oh, yes, I have heard it all. I'll certainly try to deal with it like most mothers. I'll get right on that and try to nut up like the rest of the women around me do. Oh, and can someone tell me what I am supposed to say when I am out with a group of women, they are bragging about their children, and I feel like disappearing into the floor because I don't know how to talk about my own kid without making anyone feel uncomfortable? Yeah, the last time I tried to talk about Erik and how amazing he was, I got this: "That's so sad." I can't even talk about my own kid.
Oh yeah. I almost forgot.
Still no phone call from church. I'm not finding comfort in much of anything associated with religion anymore. After this week, I probably get to tell the church that I once loved, where I learned Bible verses as a child, where I sat in a pew with my folks over the years, where I was baptized, and where I was married at age 30, to go fuck itself with great gusto. I suppose it's time. After all, I reached out for help just a mere two years ago.
Labels: behavior, church, impulsiveness, Williams syndrome
17 Comments:
Chocolate cake shot: layer a shot glass with half vodka, half frangelico. Dip a lime quarter in sugar. Bite and suck. With the juice in your mouth, do the shot. Mmmmm. Chocolate cake.
Diet? Um ... try it with splenda?
This is where you call up a BFF and say, I HAVE ON MY ROBE AND I'M DRIVING TO THE COAST. (Scene from the book "La-la Sisterhood").
I have nothing to say but this sucks, sucks, sucks. And you're not a bad mother, you are apparently a freakin' saintly mother, because all it took was encopresis with my first child (kid refused to poop) to cause me to literally beat my fists and forehead against the wall. So the fact that you didn't run screaming out into the snow shows your halo, as far I'm concerned.
And I know you didn't post this for tea and sympathy, but since I can't drive over to your house and take you out for margaritas, I had to post something. But really, if I could, it would be margs. And chips. Skinny girl.
Ditto Nancy. I am in the very same place lately.
Nancy,
I don't know if you will read this or not but I felt the need to comment. First let me say how sorry I am that you are going through this. I don't have a very "high" tolerance level so I commend you for not losing it. Second I have to tell you I am glad you are sharing but it scares me. Although Noah is a sweet affection little boy he has already slapped and thrown toys in frustration so I fear for what may lie ahead. Yeah it may be "typical" 2year old behavior or it may escalate. I have to confess it terrifies me because as a teen my oldest daughter was very abusive. I actually went to work one day with her teeth marks on my arm. She is wonderful now but it took alot of years to get her anger and frustration under control. I will say that the only thing that worked was her developing a relationship with God. Please don't give up on him. If you feel the need give up on your church it sounds like they aren't doing much to help you right now. But don't give up on him. Keep talking to him. Somedays I truly feel like he is the only one who cares and understands. Love you guys.
Oh Nancy, I wish I had some sort of advice for you, but I just don't. I haven't been in that situation before, so I don't know what I would do or how I would react. I know I would be at my wits end though. I'm so sorry for the change in his behaviour and what he is doing to you. I'm sorry you're not getting the support from your church either. Wish I could offer you something more, but sending you prayers, thoughts, and cyber hugs.
Oh god i do understand Nancy, i remember sobbing myself to sleep wondering what the hell had happened to my angel child and where had the violent angry Angry monster come from - i spent a large portion of time wondering if Jai was bipolar with the sweet innocent angel one min that could turn into a terrifying horror so suddenly that i just wanted to up and leave him on the nearest door step.
BTW.
"So sad" That, my dear is a load of crap. They are two words i could never use to describe anything about Eric.
Now stop me before i grab my passport fly to the states, kidnap you and force you to travel across the USA in a bright red convertable and a head scarf!
I'm so glad you have us, and I'm even more glad that we have you. Love you much, my friend.
Nancy, I know you don't want a comment and you don't have to post mine. I just want you to know that if you need to talk, you can call me anytime. I'm where you are. Caleb is where Erik is, and has been. Sometimes the loony bin looks real good. Even jail looks good somedays. Those weeks come and stay for awhile, and then go for a short time, and come back. It's hard. It sucks. I hate it. Email me if you want my number.
Nancy,
I don't really know what to say. I'm praying for your family and hoping that these behaviors end. I hate that we live so far apart. I so wish I could come over and just give you a break. Or a big margarita.
I love you! Hugs :)
There are no words of wisdom when times like what you descibe come. It does just totally suck! It is like someone has come and taken your child away and replaced them with a person that you do not know and truthfully don't reallyw ant to know. It is hard.
I can not tell you how many people have told me the same thing "so sad"...it just burns me! I want to brag about my child too. Just like every parent does. Even if it is not about the same type of things. I still am proud of my child and even more proud of what she has gone through to get where she is.
The loony bin does sound nice on many occasions....even a hospital stay for myself. Someone to wait on me hand and foot and just leave me alone!!!
Sending you as many good vibes as I can!!
Noel
There are no words of wisdom when times like what you descibe come. It does just totally suck! It is like someone has come and taken your child away and replaced them with a person that you do not know and truthfully don't reallyw ant to know. It is hard.
I can not tell you how many people have told me the same thing "so sad"...it just burns me! I want to brag about my child too. Just like every parent does. Even if it is not about the same type of things. I still am proud of my child and even more proud of what she has gone through to get where she is.
The loony bin does sound nice on many occasions....even a hospital stay for myself. Someone to wait on me hand and foot and just leave me alone!!!
Sending you as many good vibes as I can!!
Noel
Nancy, I hope you know I love you and Erik to pieces. I'm sitting here at work wiping away tears. All week I've been telling Bob I wouldn't wish the behavior associated with ws on my worst enemy. It is so painful and hurts so bad. And - yes - I love the "it's normal" comments from other parents. Don't you just LOVE that! Do they realize we'd switch places just for one day so they see the hell on earth we go thru? I'm thinking of you - and hoping that you are able to get some time away somehow this weekend. If possible, have your mom watch him so you can get away for a couple of hours (or a night). You need it and deserve it. Thank you for posting with such honesty. I hope you don't mind - but I am posting a link on my blog so my family and friends can read it. Again, your honesty is so appreciated and makes me feel like I'm not alone. For some reason, it feels good to lay down at night and know I'm not the only one going thru this. Squeeze Erik extra tight for me today and I do hope you are able to get some time away this weekend. Please email me anytime -
Hugs,
Tara
A man walks into a bar. Sits down. No one is near him. He grabs a couple of bar nuts. He orders a beer from the bartender. While the bartender is getting his beer he hears a very soft voice whisper "You are an amazing man.". He looks around and sees no one. Perplexed he sips on the beer just handed to him. The bartender goes to the other side of the bar to help another customer. The man again hears a soft voice whisper "You are magnanimous and well respected". He looks around again and still sees no one around him. He is now a bit disturbed as he shakes his head and sips his beer. Again he hears the voice whisper "You are handsome and a great dresser". This time the man calls the bartender over and says he has been hearing a voice saying nice things to him and was wondering if he was going crazy. The bartender replies "No, sir. You are not crazy. It's the bar nuts. They are complimentary."
Dearest Nancy, I had an episode like this in the mall the other day with Daven. I could see the hate and violence in his eyes as he ripped my earrings out of my ears, threw my glasses, and slapped me all under 3 seconds. I didn't know what to do except get us both out of that mall and him strapped into a car seat as quickly as possible. So I literally carried my screaming kicking son potato bag style out of that place.
There is nothing I can say that will make things any better. Just know that someone who loves you seems to be going through the same struggles.
I like to call these CODE RED days. I drink all the diet soda I can get my hands on and day dream of living it up in a house set on the beach. (Sometimes I even get in the car and head in that direction!) LOVE YOU!
Oh, honey. I so wish I could fix it. You are the hero, and you're the one taking the pain. The dark side of WS is terrifying. I can tell you that your feelings are valid, and that I love and respect you deeply.
Love, Mom
A mother was working in the kitchen listening to her 5 -year- playing with his new electric train in the living room. She heard the train stop and her son saying, "All of you sons of bitches who want off, get the hell off now...cause this is the last stop! And all of you sons of bitches who are getting on, get your asses on the train.. cause we're going down the tracks.
The horrified mother went in and told her son, "We don't use that kind of language in this house. Now I want you to go to your room and you are to stay there for TWO HOURS. When you come out, you may play with your train...but I want you to use nice language."
Two hours late r, the boy came out of the bedroom and resumed playing with his train. Soon the train stopped and the mother heard her son say... "All passengers, please remember your things, thank you and hope your trip was a pleasant one. We hope you will ride with us again soon."
She heard her little darling continue..."For those of you just boarding, remember, there is no smoking in the train. We hope you will have a pleasant and relaxing journey with us today."
As the mother began to smile, the child added, "For those of you who
are pissed off about the TWO HOUR delay, Please see the bitch in the kitchen.
Nancy,
It sucks! It Sucks! It Sucks! We have times like this with Arianna in the past as well. Just the other day she bit my finger so hard it throbbed for hours...I thought I'd loose the fingernail...so, yup, I hear ya ...loud and clear. Thank God there are other mom's who "get it" even if we are just online for eachother!
I love you and despite the pain you are enduring, you are doing a kick ass job.
XOXO
Amy
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