Thursday, December 27, 2007
"It's a Wonderful Life"
Well... We were all ready to watch. Sam was sleeping, we set up a nice spot on the living room floor with a great bottle of wine and some really good snacks... As soon as the movie started Scott said "What the hell are we watching, a black and white movie???" So I said "Come on honey I heard it is a great movie, just give it a chance, pleaseeee." So we got into about an hour of it and I have to say it was really painful, LOL... It must be me, I must be totally corrupted by modern cinematography. All I heard was wah wah wah wah wah... I couldn't stand it. Maybe if the movie was redone starring Brad Pitt and Julia Roberts or something it would be easier to get into. I couldn't understand a word they were saying. The actors spoke so quickly, scenes were jumping all over the place. Scott and I couldn't really follow it at all. I know its what most would expect of me, I am known to be a little slow on the uptake at times. But Scott is actually quite brilliant and even he had a hard time following. Well, we ended up changing the channel and watching my most favorite Christmas movie, "A Christmas Story." I am going to give "It's a Wonderful Life" another try and rent it so we don't have to deal with the commercials. But thanks anyway for the recommendations...
Thursday, December 20, 2007
Christmas Cheer!
Yeah I know, I know... but I was brought up celebrating Christmas what can I say. Christmas for me was never about Jesus anyway, its always been about spending time with family, baking great cookies, eating, and watching lots and lots of movies in our living room by the fireplace. I miss having a fire place, and I miss being able to lay down all day watching movies. So in the spirit of the season what is your favorite Christmas movie ever. I am sure my favorite movie may be mostly everyone elses too. Let's see...
Tuesday, December 18, 2007
I Feel Your Pain... HA!!!!!!!
I almost feel like I should apologize because I haven't written in a while. To be honest I have been putting most of my left over energy in preparing for the class I am teaching. I have also been a bit under the weather, and so was Scott and Sam. So the very little energy I had left went to resting a bit.
I thought it would be interesting in this post to share a little of what I am teaching in my Early Intervention class. One of the lectures I gave focused on the seven stages of grieving. These stages are only partially sequential and I say that because any little blip in a person's universe can knock them right back down to a depressed state or an angry state or even to the very beginning stages of shock. So here are the stages...
Shock –shock is a numb, distancing feeling that engulfs the parent when bad news is being delivered. Parents often report that they didn’t hear a word the doctor said or that they didn’t understand what the diagnosis meant.
Disbelief – During this stage, parents do not believe the diagnosis given for their child.
Denial – Parents may refuse to even consider that their child has a disability. During this stage, they may “doctor shop” for another professional who will recant the original diagnosis. Professionals become frustrated during this stage. Often “students” of EI spec. ed programs want to know how to hurry the parent along through this stage. The only approach that works best is to listen to the parent, accept their emotions, validate them, and be available for support when the parents conclude that their child does indeed have a disability.
Anger – As denial breaks down and the child’s condition becomes more real and apparent, parents begin to experience angry feelings. It is helpful for the parents to recognize anger as a potentially positive sign that the parents have begun to accept the child’s condition.
Bargaining – The parent makes a mental wager with a higher power and/or decides that dedication to a task or work will somehow alleviate their child’s condition or negate it altogether. The parent becomes very busy during this stage and this time leaves little interactions with personnel.
Depression – Parents will make statements like what’s the use? Why even bother to come to the center anymore – nothing is going to change. Part of what causes the depression is that the parents have moved through some parts of the previous stages and are now confronted with the child’ s disability for the rest of their lives, and they may be worried about what will happen to their child after they die.
Acceptance – The stage of acceptance is often misunderstood by professionals and parents alike. Acceptance means that the parent can look past the disability and accept the child as the child is. It does not mean that the parent would not change the situation if it were possible but rather that the parents can envision a life for themselves and their child, in spite of the disability.
These are not pretty things to experience at all. But at some point in every one's life you do have to deal with the unfortunate instance of losing a loved one or going through some awful tragedy and in some way shape or form you experience these stages of grief. Some more intense then others. Certainly it is no one's place to be as presumptuous as to tell you that they know what you are going through.
What's interesting is that some people are naive enough to tell me that they feel my pain or know what I am going through. To be honest even other parents of special needs kids may have a little more of a clue but every one's family is different and every one's circumstances are different. So when people tell me that they are going through my agony with me that they feel my pain, "maybe not to my extent but close enough," I have two words for ya... FUCK YOU!!!!
Oh yes I did...
When such a stupid comment is thrown my way it completely invalidates every piece of my being. How could someone possibly even come close, even feel a thumb nail of what I am going through. HOW, HOW, HOW.... Tell me I would like to know???? No one and I mean NO ONE can possibly feel or even come close to feeling what I feel. That includes, friends, grandparents, siblings, therapists, doctors, nurses, etc... Yeah sure, hurt maybe, sad maybe, helpless maybe... But not what I'm feeling no way. I am even going to go as far as to say that Scott doesn't go through what I go through every single day. He definitely comes to a close second, but its not the same. Only now can I say that because I now know what it feels like to leave the house for half a day. Only now do I know because I am working on Sundays.
Did you know that EVERY single time I hear my child take a breath I constantly feel like I am being stabbed in the chest because he sounds like he's gargling and breathing through a straw?
Did you know that every time that stupid suction machine goes off (at least 4-5 times an hour) my son gets so scared and upset that it just completely makes my heart bleed still? The guilt is overwhelming.
Did you know that every time I have to pick up the phone at least twice a month to call Sam's medical equipment company I pray and compromise my limbs, sight, and hearing to make sure that they don't tell me that the warehouse is out of feeding bags or his very special kind of formula so god forbid I can't feed my son.
Did you know that every time I see a child running, playing or eating on TV or in the present it takes my breath away in absolute horror because my son may never be able to enjoy any of those things?
Did you know that every time I take a bite of food or a sip of water I feel so overwhelmingly guilty that my son can't endure the same benefits from oral nutrition that I often thought I should get a feeding tube and stop eating all together because if he can't eat then why should I?
Did you know that every time a therapist has to cancel on us my heart completely breaks in half because its just one less chance that Sam has to function normally?
Did you know that when Sam is having trouble sleeping I stand over his crib to make sure he is not going into respiratory distress and pray that we don't have to go to the hospital?
Did you know that every time I have to change, bathe, and dress Sam I pray that his tube doesn't pop out and we have to go to the hospital?
Did you know that almost on a daily basis I have to fight with either my nursing agency, nurses, therapists, insurance company, doctors etc... to ensure that Sam gets all of his needs met?
Did you know when I went to the mall to go holiday shopping I cried the entire time I was there because all I saw were moms running after their kids in the mall waiting on line to take pictures with Santa Claus?
Did you know that I never have a minute of privacy in my own home because we always have nurses, a housekeeper, visitors, therapists, etc..?
Did you know that my husband and I can't even have sex without someone else knowing what we are doing because there are always people in my house and the walls are very thin?
Did you know that my husband and I can't even have a fight like normal couples without the rest of the world knowing because there are always people in my house?
Did you know that when I am in a pissy mood I have to have 50 people ask me what's wrong or get mad at me because I am not filled with shits and giggles 24/7?
Did you know that every time I see a therapist, doctor, or nurse my stomach is in knots because at some point during their visit they say at least one negative thing about my son? Not in a bad way, most of the time they don't even realize but it bites me in the ass every single time!
Did you know that at the beginning and at the end of the day instead of loving and enjoying my baby I have to have a full on wrestling match with him to make sure he gets 3 nebulizer treatments so that he doesn't die?
These are just a few small things that I go through on a daily basis. So the next time you decide to tell me you are going through what I am going through or you feel my pain or you have it tough too, try stabbing yourself in the chest about a thousand times pour acid all over the wound and then maybe, just maybe can I accept that you understand a little more then a hang nail of what I am going through.
I thought it would be interesting in this post to share a little of what I am teaching in my Early Intervention class. One of the lectures I gave focused on the seven stages of grieving. These stages are only partially sequential and I say that because any little blip in a person's universe can knock them right back down to a depressed state or an angry state or even to the very beginning stages of shock. So here are the stages...
Shock –shock is a numb, distancing feeling that engulfs the parent when bad news is being delivered. Parents often report that they didn’t hear a word the doctor said or that they didn’t understand what the diagnosis meant.
Disbelief – During this stage, parents do not believe the diagnosis given for their child.
Denial – Parents may refuse to even consider that their child has a disability. During this stage, they may “doctor shop” for another professional who will recant the original diagnosis. Professionals become frustrated during this stage. Often “students” of EI spec. ed programs want to know how to hurry the parent along through this stage. The only approach that works best is to listen to the parent, accept their emotions, validate them, and be available for support when the parents conclude that their child does indeed have a disability.
Anger – As denial breaks down and the child’s condition becomes more real and apparent, parents begin to experience angry feelings. It is helpful for the parents to recognize anger as a potentially positive sign that the parents have begun to accept the child’s condition.
Bargaining – The parent makes a mental wager with a higher power and/or decides that dedication to a task or work will somehow alleviate their child’s condition or negate it altogether. The parent becomes very busy during this stage and this time leaves little interactions with personnel.
Depression – Parents will make statements like what’s the use? Why even bother to come to the center anymore – nothing is going to change. Part of what causes the depression is that the parents have moved through some parts of the previous stages and are now confronted with the child’ s disability for the rest of their lives, and they may be worried about what will happen to their child after they die.
Acceptance – The stage of acceptance is often misunderstood by professionals and parents alike. Acceptance means that the parent can look past the disability and accept the child as the child is. It does not mean that the parent would not change the situation if it were possible but rather that the parents can envision a life for themselves and their child, in spite of the disability.
These are not pretty things to experience at all. But at some point in every one's life you do have to deal with the unfortunate instance of losing a loved one or going through some awful tragedy and in some way shape or form you experience these stages of grief. Some more intense then others. Certainly it is no one's place to be as presumptuous as to tell you that they know what you are going through.
What's interesting is that some people are naive enough to tell me that they feel my pain or know what I am going through. To be honest even other parents of special needs kids may have a little more of a clue but every one's family is different and every one's circumstances are different. So when people tell me that they are going through my agony with me that they feel my pain, "maybe not to my extent but close enough," I have two words for ya... FUCK YOU!!!!
Oh yes I did...
When such a stupid comment is thrown my way it completely invalidates every piece of my being. How could someone possibly even come close, even feel a thumb nail of what I am going through. HOW, HOW, HOW.... Tell me I would like to know???? No one and I mean NO ONE can possibly feel or even come close to feeling what I feel. That includes, friends, grandparents, siblings, therapists, doctors, nurses, etc... Yeah sure, hurt maybe, sad maybe, helpless maybe... But not what I'm feeling no way. I am even going to go as far as to say that Scott doesn't go through what I go through every single day. He definitely comes to a close second, but its not the same. Only now can I say that because I now know what it feels like to leave the house for half a day. Only now do I know because I am working on Sundays.
Did you know that EVERY single time I hear my child take a breath I constantly feel like I am being stabbed in the chest because he sounds like he's gargling and breathing through a straw?
Did you know that every time that stupid suction machine goes off (at least 4-5 times an hour) my son gets so scared and upset that it just completely makes my heart bleed still? The guilt is overwhelming.
Did you know that every time I have to pick up the phone at least twice a month to call Sam's medical equipment company I pray and compromise my limbs, sight, and hearing to make sure that they don't tell me that the warehouse is out of feeding bags or his very special kind of formula so god forbid I can't feed my son.
Did you know that every time I see a child running, playing or eating on TV or in the present it takes my breath away in absolute horror because my son may never be able to enjoy any of those things?
Did you know that every time I take a bite of food or a sip of water I feel so overwhelmingly guilty that my son can't endure the same benefits from oral nutrition that I often thought I should get a feeding tube and stop eating all together because if he can't eat then why should I?
Did you know that every time a therapist has to cancel on us my heart completely breaks in half because its just one less chance that Sam has to function normally?
Did you know that when Sam is having trouble sleeping I stand over his crib to make sure he is not going into respiratory distress and pray that we don't have to go to the hospital?
Did you know that every time I have to change, bathe, and dress Sam I pray that his tube doesn't pop out and we have to go to the hospital?
Did you know that almost on a daily basis I have to fight with either my nursing agency, nurses, therapists, insurance company, doctors etc... to ensure that Sam gets all of his needs met?
Did you know when I went to the mall to go holiday shopping I cried the entire time I was there because all I saw were moms running after their kids in the mall waiting on line to take pictures with Santa Claus?
Did you know that I never have a minute of privacy in my own home because we always have nurses, a housekeeper, visitors, therapists, etc..?
Did you know that my husband and I can't even have sex without someone else knowing what we are doing because there are always people in my house and the walls are very thin?
Did you know that my husband and I can't even have a fight like normal couples without the rest of the world knowing because there are always people in my house?
Did you know that when I am in a pissy mood I have to have 50 people ask me what's wrong or get mad at me because I am not filled with shits and giggles 24/7?
Did you know that every time I see a therapist, doctor, or nurse my stomach is in knots because at some point during their visit they say at least one negative thing about my son? Not in a bad way, most of the time they don't even realize but it bites me in the ass every single time!
Did you know that at the beginning and at the end of the day instead of loving and enjoying my baby I have to have a full on wrestling match with him to make sure he gets 3 nebulizer treatments so that he doesn't die?
These are just a few small things that I go through on a daily basis. So the next time you decide to tell me you are going through what I am going through or you feel my pain or you have it tough too, try stabbing yourself in the chest about a thousand times pour acid all over the wound and then maybe, just maybe can I accept that you understand a little more then a hang nail of what I am going through.
Monday, December 10, 2007
More CME
Look at the difference between these two videos.
This one is from the very first session. http://www.vidtest.com/view_video.php?viewkey=bb0c9b8a3bf979d3b917&page=1&viewtype=&category=mr
And this is from the fourth session.
http://www.vidtest.com/view_video.php?viewkey=cf995530ea53652ddf8f&page=1&viewtype=&category=mr
This one is from the very first session. http://www.vidtest.com/view_video.php?viewkey=bb0c9b8a3bf979d3b917&page=1&viewtype=&category=mr
And this is from the fourth session.
http://www.vidtest.com/view_video.php?viewkey=cf995530ea53652ddf8f&page=1&viewtype=&category=mr
Saturday, December 8, 2007
Sam and Ramon
During Sam's sessions with Ramon Cuevas our pediatrician Dr. Koplow came to visit and video tape some of the session. This all took place on Thanksgiving morning. If you click the link below you can see a small portion of what CME consists of. Sam has been doing very well since his sessions with Ramon. Also a special thanks to Sam's PT Yoni, who really put a lot of effort into making sure Sam got in to see Ramon. Sam really enjoyed his CME sessions. Ramon was incredibly gentle, kind and engaging. Sam just loved it!
http://www.vidtest.com/view_video.php?viewkey=cf995530ea53652ddf8f&page=1&viewtype=&category=mr
http://www.vidtest.com/view_video.php?viewkey=cf995530ea53652ddf8f&page=1&viewtype=&category=mr
Friday, November 30, 2007
TGIF
OK, its Friday time to participate.... Let's see who knows their movie lines.... What is your favorite movie line ever? You know, that line from a movie that you repeat over and over again and if a person doesn't get it you look at them like they were born on another planet. I know its hard to just pick one and if you must write more that's fine, just don't give me a million....
Thursday, November 29, 2007
I'm better than that...
Its interesting the twists and turns that life brings before us, all of us. I find myself often questioning my purpose and the purpose of others. Is life really just a compilation of lessons that we must learn from one an other and from ourselves. Is our goal here on earth to be good to others regardless of how you are treated? Is the goal to be tolerant? Is the name of the game forgiveness? Obviously no one can answer these questions but I find that when I speculate on the above it helps to bring me to a greater place within myself or does it...
Today I got a huge bitch slap right in the face. I can't elaborate on the specifics due to legal reasons but try and follow the best you can. So someone who I trusted and who I did beautiful and over the top generous things for decided to take tremendous advantage of my kindness and is really putting my entire family under a lot of stress. Knowing the heartache and burdens that I have to live with on a daily basis this person is still doing a very terrible thing to my family. How this person can live with themselves is beyond me. In my eyes it is the equivalent of drowning poor innocent puppies. Only a monster would behave like this and think of only themselves. Only a really god awful poor excuse for a human being would kick a person while they are down like this. My first reaction was certainly to call, harass, yell, scream, cry, etc... But now as I think more and more about the situation I know I am a better human being. I took a deep breath and I prayed for this person. I feel sorry for this person.
Half of me wants to never be kind again, never trust again, never be generous again. But I know that whether I am kind or not, generous or not, trusting or not, there will always be someone out there looking to take advantage or hurt or abuse. So I want to do my part for the good of humanity and not be spoiled by the sourness of this situation. I will hold my head high and continue to be kind, to be generous, to be trusting, etc... I know who I want to see when I look in the mirror everyday and I think I do a damn good job of working hard to be that person. I am not saying I am anything close to perfect but I do have integrity and I do have a heart.
With the upcoming New Year and all of our new New Year resolutions could we all maybe try to be better people (whatever that means) with the hope that it will spread on to others and we can all have a better year to come...
Today I got a huge bitch slap right in the face. I can't elaborate on the specifics due to legal reasons but try and follow the best you can. So someone who I trusted and who I did beautiful and over the top generous things for decided to take tremendous advantage of my kindness and is really putting my entire family under a lot of stress. Knowing the heartache and burdens that I have to live with on a daily basis this person is still doing a very terrible thing to my family. How this person can live with themselves is beyond me. In my eyes it is the equivalent of drowning poor innocent puppies. Only a monster would behave like this and think of only themselves. Only a really god awful poor excuse for a human being would kick a person while they are down like this. My first reaction was certainly to call, harass, yell, scream, cry, etc... But now as I think more and more about the situation I know I am a better human being. I took a deep breath and I prayed for this person. I feel sorry for this person.
Half of me wants to never be kind again, never trust again, never be generous again. But I know that whether I am kind or not, generous or not, trusting or not, there will always be someone out there looking to take advantage or hurt or abuse. So I want to do my part for the good of humanity and not be spoiled by the sourness of this situation. I will hold my head high and continue to be kind, to be generous, to be trusting, etc... I know who I want to see when I look in the mirror everyday and I think I do a damn good job of working hard to be that person. I am not saying I am anything close to perfect but I do have integrity and I do have a heart.
With the upcoming New Year and all of our new New Year resolutions could we all maybe try to be better people (whatever that means) with the hope that it will spread on to others and we can all have a better year to come...
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