Here is the new video I made with the iMovie program. Let me know what you think :)
More Beautiful Than Tragic
All truth goes through three stages. First it is ridiculed. Then it is violently opposed. Finally, it is accepted as self-evident . Facts are stubborn, and refusal to accept them does not avoid their inexorable effects-the tragic consequences are now upon us - Hellen Keller. The time has come for everyone to step up and be an advocate for our children. It is no longer enough to simply ask questions. We need to demand answers.
Thursday, August 8, 2013
Saturday, July 27, 2013
Coming soon......
I made this video during an Apple training seminar I was at for work. We had about 10 or so minutes to "play" after he taught us how to do it. I can't wait to spend some more time with the iMovie program!
Sunday, June 9, 2013
Christianity and the Law of Attraction
I recently (in the past two years) found a church that my family and I call home.
The experience for me has been quite profound. I finally found a church that I fit into despite my inability to completely appreciate all aspects of "religion". Despite being raised in Catholic schools my whole life, it is only now that I feel connected to God.
It's been a process for me though....
I knew I wanted to expose KC to the Church, I just wasn't sure how at first. A few people have wondered out-loud why I didn't baptize him as a child. I didn't have a clear answer, but I knew that it needed to be real and authentic in order to be meaningful for him.
What I like about the Church I attend now is that it is very welcoming to any and all people. They spend most of the "preaching" time giving practical advice on how to live a Godly life in today's day and age. I am learning a lot, and so is KC.
The worship band is what originally drew us in. For the first 30 minutes we listen to an amazing worship band with several main vocalists, guitar, piano, etc. KC loves it and gets so excited when the 5 minute countdown begins on the screen. During the time the band is playing, KC sings, dances, and worships.
But like I said.....it has not been a clear cut path for me. I have trust issues, and sometimes I don't know what to believe. I can't say I don't sometimes have doubts. But I do know that when I am there, I feel so connected. At other times, I feel conflicted.
In the past, I have studied and learned a little bit about the Law of Attraction.
It is very interesting, and I am convinced that certain things that happen, can only be explained by this principle. So it brings to mind for me the principles of Christianity. Faith, hope, trust....these are central to Christianity. I believe they are the same as positive thinking, prayer, etc. We may call it different things, but essentially they seem to incorporate the same principles, with a few notable exceptions.
Continuing with the concept that some things are only explained by the Law of Attraction, I have seen other things that as far as I can tell, can only be explained in terms of God. For me, science just can't explain everything.
I decided to do some research to see what other people have concluded on the subject. I will post here the one that I like best. I'm interested to hear thoughts on this. Some of what the article says supports my assertion but I suspect it is not as black and white as it is portrayed to be. But that's just my opinion as I understand it so far.
Friday, June 3, 2011
How many times can one heart break in a lifetime...
Lets be clear about one thing. I understand that things are probably not as bad as I feel like they are right now. I am grateful for what I have with KC. I am very aware of how lucky I am that he does as well as he does. But I can simultaneously feel lucky in that way, while I also break inside in other ways.
KC had an appointment today with his Neuro-psychiatrist.
Dr. NP (short for Dr. Neuro-psych) told me at our last visit that while Dr. Neuro may have run out of options to treat the seizures, we have only just begun opening up Dr. NP's bag of tricks. We have many more options. I felt great hearing this! And, as it turned out, the slight med tweak that we did at that appointment bought us a month or so of the best progress we have seen yet with KC. Huge language burst, calmness, etc. All hitting, throwing, and self-injurious behavior ceased. He began coming when called, consistently!! It was nothing short of amazing. My Mom took KC to the Zoo and described it, with tears of joy in her eyes, as feeling like she was taking her typical grandson to the Zoo. He stayed near her with no leash or stroller, waited in line, no meltdowns. It was a beautiful thing.
I knew the whole time that this would not likely last. I tried like hell not to get used to it. I expected some back sliding and felt that I was safely guarding myself. I was wrong. What I did not prepare myself for was for KC to suddenly loose all of his new skills, and behavior and end up further back than he was before we started the risperadol. Pretty much overnight. For the last three weeks I have been wracking my brain trying to understand how this could have happened. I am trying everything I can think of to help him get back on track.
I emailed Dr. NP, who responded with something like "Karen I am sure we can figure out what is going on and find a way to help KC. Come see me". So, I made the appointment! I went in today hoping against hope that he was right. I felt almost desperate. But hopeful.
The first hit I took was the fact that Dr. NP was NOT EVEN IN TODAY. He pawned us off on some doctor I have never even met! We did see the resident prior to seeing Dr. Whoeverthefuckheis. She was kind, and gentle. We discussed some OT options with regards to stimulating KC so that he will not continue to claw at his eyes constantly. We need to do something before he does serious damage to his eyes. As it is, each night his eyes are red, swollen and watery from constant poking. She had a few suggestions about possibly putting KC on an anti-depressant to try to help with behaviors. We talked for quite a while, but she never really said why this happened in the first place, so I asked. Teary eyed, and desperate. "Why is this happening, and how can we keep it from continuing? Her answer? It was in a soft, kind voice:
"Its just the nature of the beast" She later went on to say "These types of emotional issues with be lifelong for KC. The trick is figuring out how to manage it."
And it felt like a blow to the chest.
I have been told more times than I would like to remember, that this is just how it is with kids who have IS and autism. And it kills me. Because I have seen him when he is not like this. I get these glimpses of a little boy who does not have to struggle for every fucking thing in his life. I get a view of a little boy who can function well, and can be happy. So why the fuck should I have to accept the fact that this is just how it is?! Its NOT. It can't be. After all these years of fighting, it can't be that this is how he is going to be.
And honestly, I don't think she meant it how I am taking it. I think she meant that he will always struggle with it, but eventually he will figure out how to regulate it better. But she doesn't know for sure. No one does. Maybe it was the kind, almost sad look she gave me when I so desperately asked her how we fix this. Like a doctor telling an unsuspecting patient that their disease is terminal. His isn't, but right now it feels that way to me.
Many other doctors have told me the opposite...he WILL be ok. He is smart, he has a lot of advantages that other kids in his boat don't have. But what I have been seeing in him lately is scary. He is getting worse. He is falling further and further behind other kids his age. He has never been close anyway, developmentally, but now it is way more obvious. Some behaviors are likened to a 18 month old, some more like a 2 year old. He will be 5 in October. And yea, I get it that in some ways I am lucky to have that. But I got to see him progress SO much, and the sting of seeing it all taken away is so raw.
I think that in some ways, if he was just always worse off, it might be easier. Only in some ways. Obviously in other ways it would be harder. But this here is a special kind of hell. Because I am constantly shown how much better he could be doing, only to have it ripped away. Every. Fucking. Time. I don't know how I can go on hoping, believing. It hurts so bad.
I am terrified. I am scared that this is always how it will be. He will stagnate around 2 years old and never get better. Or, even worse, he will progress and loose it all. Time and time again. What if nothing works? What if he can't ever be independent? Again, typical things with IS kids, but all these years of having the possibility of it not being this way being dangled in front of me. Its cruel. Life can be so fucking cruel sometimes. For him, my sweet baby. His own body betrays him constantly and he has to suffer the consequences. He is such a good person. He doesn't deserve this. And for me. This pain I feel right now, I have felt many times before, but it never gets easier. It does come a lot less often than it used to, so that is good. But it hurts just as bad when it comes. Words (even though I typed a lot of them) don't do justice to how sad and scared I feel right now. I hate it. No one can promise me that he will be ok. So, sometimes I just have to take a long hard look at the fact that things just might not turn out ok. Its a hard thing for a mother to deal with.
This despair I feel right now won't last. I will work through this pain and go back to dealing with things more rationally. I just have to process it in order to let it go. It just hit me hard this time because I really wasn't expecting it. One thing that will never change, is how much I love my son. He is everything that matters to me in this world. I read a quote today that seems so fitting : "This world was never meant for one as beautiful as you"
And its true. Its not him that wasn't meant for this world, its this world that wasn't meant for him. But he is here, and he's mine. And I will fight until the day I die to give him the life that he so richly deserves.
KC had an appointment today with his Neuro-psychiatrist.
Dr. NP (short for Dr. Neuro-psych) told me at our last visit that while Dr. Neuro may have run out of options to treat the seizures, we have only just begun opening up Dr. NP's bag of tricks. We have many more options. I felt great hearing this! And, as it turned out, the slight med tweak that we did at that appointment bought us a month or so of the best progress we have seen yet with KC. Huge language burst, calmness, etc. All hitting, throwing, and self-injurious behavior ceased. He began coming when called, consistently!! It was nothing short of amazing. My Mom took KC to the Zoo and described it, with tears of joy in her eyes, as feeling like she was taking her typical grandson to the Zoo. He stayed near her with no leash or stroller, waited in line, no meltdowns. It was a beautiful thing.
I knew the whole time that this would not likely last. I tried like hell not to get used to it. I expected some back sliding and felt that I was safely guarding myself. I was wrong. What I did not prepare myself for was for KC to suddenly loose all of his new skills, and behavior and end up further back than he was before we started the risperadol. Pretty much overnight. For the last three weeks I have been wracking my brain trying to understand how this could have happened. I am trying everything I can think of to help him get back on track.
I emailed Dr. NP, who responded with something like "Karen I am sure we can figure out what is going on and find a way to help KC. Come see me". So, I made the appointment! I went in today hoping against hope that he was right. I felt almost desperate. But hopeful.
The first hit I took was the fact that Dr. NP was NOT EVEN IN TODAY. He pawned us off on some doctor I have never even met! We did see the resident prior to seeing Dr. Whoeverthefuckheis. She was kind, and gentle. We discussed some OT options with regards to stimulating KC so that he will not continue to claw at his eyes constantly. We need to do something before he does serious damage to his eyes. As it is, each night his eyes are red, swollen and watery from constant poking. She had a few suggestions about possibly putting KC on an anti-depressant to try to help with behaviors. We talked for quite a while, but she never really said why this happened in the first place, so I asked. Teary eyed, and desperate. "Why is this happening, and how can we keep it from continuing? Her answer? It was in a soft, kind voice:
"Its just the nature of the beast" She later went on to say "These types of emotional issues with be lifelong for KC. The trick is figuring out how to manage it."
And it felt like a blow to the chest.
I have been told more times than I would like to remember, that this is just how it is with kids who have IS and autism. And it kills me. Because I have seen him when he is not like this. I get these glimpses of a little boy who does not have to struggle for every fucking thing in his life. I get a view of a little boy who can function well, and can be happy. So why the fuck should I have to accept the fact that this is just how it is?! Its NOT. It can't be. After all these years of fighting, it can't be that this is how he is going to be.
And honestly, I don't think she meant it how I am taking it. I think she meant that he will always struggle with it, but eventually he will figure out how to regulate it better. But she doesn't know for sure. No one does. Maybe it was the kind, almost sad look she gave me when I so desperately asked her how we fix this. Like a doctor telling an unsuspecting patient that their disease is terminal. His isn't, but right now it feels that way to me.
Many other doctors have told me the opposite...he WILL be ok. He is smart, he has a lot of advantages that other kids in his boat don't have. But what I have been seeing in him lately is scary. He is getting worse. He is falling further and further behind other kids his age. He has never been close anyway, developmentally, but now it is way more obvious. Some behaviors are likened to a 18 month old, some more like a 2 year old. He will be 5 in October. And yea, I get it that in some ways I am lucky to have that. But I got to see him progress SO much, and the sting of seeing it all taken away is so raw.
I think that in some ways, if he was just always worse off, it might be easier. Only in some ways. Obviously in other ways it would be harder. But this here is a special kind of hell. Because I am constantly shown how much better he could be doing, only to have it ripped away. Every. Fucking. Time. I don't know how I can go on hoping, believing. It hurts so bad.
I am terrified. I am scared that this is always how it will be. He will stagnate around 2 years old and never get better. Or, even worse, he will progress and loose it all. Time and time again. What if nothing works? What if he can't ever be independent? Again, typical things with IS kids, but all these years of having the possibility of it not being this way being dangled in front of me. Its cruel. Life can be so fucking cruel sometimes. For him, my sweet baby. His own body betrays him constantly and he has to suffer the consequences. He is such a good person. He doesn't deserve this. And for me. This pain I feel right now, I have felt many times before, but it never gets easier. It does come a lot less often than it used to, so that is good. But it hurts just as bad when it comes. Words (even though I typed a lot of them) don't do justice to how sad and scared I feel right now. I hate it. No one can promise me that he will be ok. So, sometimes I just have to take a long hard look at the fact that things just might not turn out ok. Its a hard thing for a mother to deal with.
This despair I feel right now won't last. I will work through this pain and go back to dealing with things more rationally. I just have to process it in order to let it go. It just hit me hard this time because I really wasn't expecting it. One thing that will never change, is how much I love my son. He is everything that matters to me in this world. I read a quote today that seems so fitting : "This world was never meant for one as beautiful as you"
And its true. Its not him that wasn't meant for this world, its this world that wasn't meant for him. But he is here, and he's mine. And I will fight until the day I die to give him the life that he so richly deserves. Tuesday, May 17, 2011
I recently read an article, and I wanted to sum it up and give you some main points, but I am falling short and feel like you need to get it directly from the horses mouth. I will post the parts that I find importnat, and I will link the entire article so you can read if you choose.. I would specifically pay attention to the part that talks about how the Vaccine court works...how quietly it works.
Judy Converse, MPH RD LD, May 10, 2011 writes...
When we have our babies, we feel safe because we have vaccines. We regard them as no less than life-granting elixirs of modern times, the dividing line between a safe and secure health trajectory for our kids, and certain death from diseases of yore.
But cracks in that comfortable veneer have definitely formed, giving a sense of the inevitable to what was once inconceivable. Have we tapped out the usefulness of vaccines? Are they more harm than good, as we now use them?
And now this. A cluster of parents who managed to survive Vaccine Court – a little known corner of hell reserved for those whose children are injured or killed by vaccinations – have banded together to speak out. Vaccine Court is where you end up if you know enough to file a claim for a child’s vaccine injury. Since the pharmaceutical industry won itself protections against any liability for injury law suits in the 1980s, and since the Supreme Court solidified this protection by removing parents’ rights to pursue civil court appeals just this year, families are left to make claims with the government when the unthinkable happens to a baby or child who is dutifully submitted for shots. For twenty-five years, a tax added to the sale of each vaccine has paid into a fund to take care of these children. That is, if parents know of and pursue their rights, and if they prevail in this court system.
For years, at the same time we’ve heard assurances that vaccines are safe, the federal government’s Vaccine Court has quietly paid millions to families whose children suffered devastating brain injuries from routine shots. “Quiet” is the operative word here, as parent Sarah Bridges, who holds a PhD in psychology, explains: She was advised “very routinely” by her lawyer to “be careful talking about this” lest her son’s custodial funds evaporate. At risk of losing their hard won compensation – these cases have been gagged for a quarter century – parents are now speaking out, and revealing that their children were the canaries in the coalmine. Ms. Bridges’ son for example, who is now seventeen years old, has mental retardation, epilepsy, and autism thanks to infant vaccinations, and lives in a care home wearing a diaper and a helmet thanks to the compensation program paying for it all.
This is bad news for anyone who feels unsafe without vaccines.
I don’t feel afraid without vaccines. Even with a master’s degree in public health, and years of university training in health sciences, I am relieved to see what may be a tipping point here.
Meanwhile, more integrative medicine strategies evolve every year – tools that rely less on drugs and surgery and more on whole organic foods, reduced toxins, nutraceutical strategies, or other modalities. Witness the success of vitamin D in preventing and shortening course of flu, for one small example out of hundreds, that illuminate the potential of pharmaceutical and toxin-free strategies to minimize infectious disease.
These strategies tend to be unpopular with the medical press and our government health agencies. What that means is that if the bloom is off the vaccine rose, they are going to be the last to admit it – but that’s another blog. In the meantime, be a smart health consumer for your own babies and kids. Read alternative views on vaccination, tap providers trained to engage nutrition-focused tools for healthy immune function. If you want to opt out of the vaccine schedule in whole or in part, you can
- Check your state’s mechanisms for vaccine choice by clicking here.
- Switch to a family practice physician, osteopathic doctor (DO) or a naturopath (ND), if your pediatrician is coercive about vaccines beyond your comfort level.
- Read Special Needs Kids Go Pharm-Free: Nutrition-Focused Tools To Minimize Meds and Maximize Health and Well Being, even if your kid isn’t diagnosed with a special need. See the chapter on avoiding infections, and the section on working with providers to help you through infections when they occur.
We all owe a debt to the 83 Canaries, the children the government did not want you to know about who have been thrown under the vaccine bus. Their parents are speaking out, and according to Mary Holland at the Elizabeth Birth Center for Autism Law and Advocacy (EBCALA), it’s just the tip of the iceberg.
Judy Converse, MPH RD LD, May 10, 2011 writes...
When we have our babies, we feel safe because we have vaccines. We regard them as no less than life-granting elixirs of modern times, the dividing line between a safe and secure health trajectory for our kids, and certain death from diseases of yore.
But cracks in that comfortable veneer have definitely formed, giving a sense of the inevitable to what was once inconceivable. Have we tapped out the usefulness of vaccines? Are they more harm than good, as we now use them?
And now this. A cluster of parents who managed to survive Vaccine Court – a little known corner of hell reserved for those whose children are injured or killed by vaccinations – have banded together to speak out. Vaccine Court is where you end up if you know enough to file a claim for a child’s vaccine injury. Since the pharmaceutical industry won itself protections against any liability for injury law suits in the 1980s, and since the Supreme Court solidified this protection by removing parents’ rights to pursue civil court appeals just this year, families are left to make claims with the government when the unthinkable happens to a baby or child who is dutifully submitted for shots. For twenty-five years, a tax added to the sale of each vaccine has paid into a fund to take care of these children. That is, if parents know of and pursue their rights, and if they prevail in this court system.
For years, at the same time we’ve heard assurances that vaccines are safe, the federal government’s Vaccine Court has quietly paid millions to families whose children suffered devastating brain injuries from routine shots. “Quiet” is the operative word here, as parent Sarah Bridges, who holds a PhD in psychology, explains: She was advised “very routinely” by her lawyer to “be careful talking about this” lest her son’s custodial funds evaporate. At risk of losing their hard won compensation – these cases have been gagged for a quarter century – parents are now speaking out, and revealing that their children were the canaries in the coalmine. Ms. Bridges’ son for example, who is now seventeen years old, has mental retardation, epilepsy, and autism thanks to infant vaccinations, and lives in a care home wearing a diaper and a helmet thanks to the compensation program paying for it all.
This is bad news for anyone who feels unsafe without vaccines.
I don’t feel afraid without vaccines. Even with a master’s degree in public health, and years of university training in health sciences, I am relieved to see what may be a tipping point here.
Meanwhile, more integrative medicine strategies evolve every year – tools that rely less on drugs and surgery and more on whole organic foods, reduced toxins, nutraceutical strategies, or other modalities. Witness the success of vitamin D in preventing and shortening course of flu, for one small example out of hundreds, that illuminate the potential of pharmaceutical and toxin-free strategies to minimize infectious disease.
These strategies tend to be unpopular with the medical press and our government health agencies. What that means is that if the bloom is off the vaccine rose, they are going to be the last to admit it – but that’s another blog. In the meantime, be a smart health consumer for your own babies and kids. Read alternative views on vaccination, tap providers trained to engage nutrition-focused tools for healthy immune function. If you want to opt out of the vaccine schedule in whole or in part, you can
- Check your state’s mechanisms for vaccine choice by clicking here.
- Switch to a family practice physician, osteopathic doctor (DO) or a naturopath (ND), if your pediatrician is coercive about vaccines beyond your comfort level.
- Read Special Needs Kids Go Pharm-Free: Nutrition-Focused Tools To Minimize Meds and Maximize Health and Well Being, even if your kid isn’t diagnosed with a special need. See the chapter on avoiding infections, and the section on working with providers to help you through infections when they occur.
We all owe a debt to the 83 Canaries, the children the government did not want you to know about who have been thrown under the vaccine bus. Their parents are speaking out, and according to Mary Holland at the Elizabeth Birth Center for Autism Law and Advocacy (EBCALA), it’s just the tip of the iceberg.
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