So, Julia got the diagnosis, sort of - PDD-NOS (pervasive developmental disorder - not otherwise specified). So, she is "kind of" on the autism spectrum. This may help tremendously with some insurance issues and may open up more opportunities for her with different programs out there. So, I guess I should be happy, right? And it doesn't change who she was yesterday, or who she will be tomorrow....its just a diagnosis. Anyway, I'm having mixed feelings about it. Glad for the extra opportunities for her, but more aggravated than ever with those who say vaccines don't cause Autism. When I get her case report from the Vaccine Injury Compensation Program - anyone interested is welcome to read it. Vaccines do cause brain injuries which lead to autism - all I have to say. I have living proof.
Susan
Friday, August 27, 2010
Monday, August 23, 2010
Wow, long time since i posted anything.......
Life moves at a very rapid pace, I have seen lately. So much has happened with so little time to document anything. I will try tonight.
First and foremost, my new daycare provider, Kayanna, is a miracle sent from God. She has jumped right in and done above and beyond what I expected. I can't wait for the settlement to hit so I can pay her better for her time that she dedicates to not only Julia, but our whole family. We are pretty sure funds will be allowed for live in care when we get the settlement, and I think she is it. What a great provider and friend she has become in such a short period of time. THANK YOU KAYANNA! Julia LOVES you. We love you for taking the time to take her places, just like any other kid, and being able and willing to overlook the stares that come with doing so. Shawn and I ordered some business cards to hand out to those who give those evil looks, or say those evil things when she is out and tantruming. I experienced this yesterday while at Elitch's with the kids when Julia was melting (from the heat and overstimulation).....can you believe a group of people behind us in line said, "if that were my daughter, I would have slapped her in the face by now"....I just picked up my daughter, held her close, and turned and gave them the evil eye - and to those of you who have experienced my evil eye - it speaks volumes - no words really needed - but I would have liked the business card.
Secondly, I have met an amazing veterinarian who has gone through a horrific murder of his son many years ago, who understands loss, and wants to become a part of my family's life. I so hope he keeps in touch. His son's story was documented in a book called "10 Minutes Till Midnight" and I read all four hundred pages in just over two days. What an inspiration. His biggest thing he has taught me is to stop questioning God. God has his plan, and everything happens for God's reason. It has helped me immensely when I find myself frustrated with Julia. Saturday, as I was towards the end of the book, I snuck in to Julia's room, and just watched her sleeping for about 10 minutes, said lots of prayers for her, and for my family, and she woke up HAPPY, instead of crying like usual, and she had the best night ever. Maybe she felt it, I don't know. I am trying to forgive and not be angry with everyone about what happened to her. It is hard, though, to forgive a pharmaceutical company and a government who knows what vaccines are capable of. It isn't like I have ONE person to forgive for murdering her....because she wasn't murdered - she is still alive, but damaged, and by something manufactured to protect her..but I just know too much about vaccines to let it go. I keep thinking about the other kids I have learned of injured by vaccines. I keep thinking of my friends and the decisions they have to make with their children after knowing Julia and I. I keep thinking of all the new babies arriving happily to their new families who will also suffer Julia's fate. Anyway, I will stop rambling. I will get there some how, some way.
Lastly, Julia started back at school today. She is in a new class, and did just fine today. Shawn sent me pictures from the drop off, and one of Julia's classmate's moms emailed me today to see if we could get the kids together and get to know each other better. Jack is back in school and doing great. He joined the cub scouts and is at his first meeting tonight with Shawn, who is pretty sure he will be a cub scout leader.....like we need another thing on our plate....but that is just Shawn.....we will figure it out and make the time to do it. I'm just glad Jack has this opportunity.
Anyway, things are going well here. Shawn and I are speaking for the "Professional Miracles Foundation" next Monday night at Pradera Golf Club. Shawn has also organized a softball tournament to raise money for Julia's school which is a non-profit run special needs school. All money raised will go to the school, not to Julia's tuition, so if anyone is interested email me or him for details. It is scheduled for October 9th.
Julia is also going to be video taped using her augmentative communication device (her "talker") by the manufacturer, as Julia's Speech Therapist is so impressed with her ability to figure it out. They are going to tape her at Speech Therapy, at her school, The Rise School of Denver, and at home. Pretty excited about that. Shawn and I were also video taped at a round table discussion on children with disabilities and training of respite care providers, which should be out soon. Whew! We are busy folks - but everything we are trying to do is good - and it is all for others - so we feel great about it!
Julia is scheduled for a "stroller/wheelchair" fitting next month to make outings a bit easier, as it is hard for her to walk long distances and she gets tired and her leg starts hurting. She is also scheduled for her next round of botox to "re-straighten" her leg again- the last round has worn off...hopefully the botox will prevent us from having to get her another new brace, as the one we just got is no longer working due to the worn off botox.....ahh, the appointments just keep coming, but - DON'T QUESTION GOD'S PLAN. Yes, Larry, you are right. I will just keep rolling with it.
Thanks to all of you who continue to follow and support Julia and our families efforts for everyone!
Susan
First and foremost, my new daycare provider, Kayanna, is a miracle sent from God. She has jumped right in and done above and beyond what I expected. I can't wait for the settlement to hit so I can pay her better for her time that she dedicates to not only Julia, but our whole family. We are pretty sure funds will be allowed for live in care when we get the settlement, and I think she is it. What a great provider and friend she has become in such a short period of time. THANK YOU KAYANNA! Julia LOVES you. We love you for taking the time to take her places, just like any other kid, and being able and willing to overlook the stares that come with doing so. Shawn and I ordered some business cards to hand out to those who give those evil looks, or say those evil things when she is out and tantruming. I experienced this yesterday while at Elitch's with the kids when Julia was melting (from the heat and overstimulation).....can you believe a group of people behind us in line said, "if that were my daughter, I would have slapped her in the face by now"....I just picked up my daughter, held her close, and turned and gave them the evil eye - and to those of you who have experienced my evil eye - it speaks volumes - no words really needed - but I would have liked the business card.
Secondly, I have met an amazing veterinarian who has gone through a horrific murder of his son many years ago, who understands loss, and wants to become a part of my family's life. I so hope he keeps in touch. His son's story was documented in a book called "10 Minutes Till Midnight" and I read all four hundred pages in just over two days. What an inspiration. His biggest thing he has taught me is to stop questioning God. God has his plan, and everything happens for God's reason. It has helped me immensely when I find myself frustrated with Julia. Saturday, as I was towards the end of the book, I snuck in to Julia's room, and just watched her sleeping for about 10 minutes, said lots of prayers for her, and for my family, and she woke up HAPPY, instead of crying like usual, and she had the best night ever. Maybe she felt it, I don't know. I am trying to forgive and not be angry with everyone about what happened to her. It is hard, though, to forgive a pharmaceutical company and a government who knows what vaccines are capable of. It isn't like I have ONE person to forgive for murdering her....because she wasn't murdered - she is still alive, but damaged, and by something manufactured to protect her..but I just know too much about vaccines to let it go. I keep thinking about the other kids I have learned of injured by vaccines. I keep thinking of my friends and the decisions they have to make with their children after knowing Julia and I. I keep thinking of all the new babies arriving happily to their new families who will also suffer Julia's fate. Anyway, I will stop rambling. I will get there some how, some way.
Lastly, Julia started back at school today. She is in a new class, and did just fine today. Shawn sent me pictures from the drop off, and one of Julia's classmate's moms emailed me today to see if we could get the kids together and get to know each other better. Jack is back in school and doing great. He joined the cub scouts and is at his first meeting tonight with Shawn, who is pretty sure he will be a cub scout leader.....like we need another thing on our plate....but that is just Shawn.....we will figure it out and make the time to do it. I'm just glad Jack has this opportunity.
Anyway, things are going well here. Shawn and I are speaking for the "Professional Miracles Foundation" next Monday night at Pradera Golf Club. Shawn has also organized a softball tournament to raise money for Julia's school which is a non-profit run special needs school. All money raised will go to the school, not to Julia's tuition, so if anyone is interested email me or him for details. It is scheduled for October 9th.
Julia is also going to be video taped using her augmentative communication device (her "talker") by the manufacturer, as Julia's Speech Therapist is so impressed with her ability to figure it out. They are going to tape her at Speech Therapy, at her school, The Rise School of Denver, and at home. Pretty excited about that. Shawn and I were also video taped at a round table discussion on children with disabilities and training of respite care providers, which should be out soon. Whew! We are busy folks - but everything we are trying to do is good - and it is all for others - so we feel great about it!
Julia is scheduled for a "stroller/wheelchair" fitting next month to make outings a bit easier, as it is hard for her to walk long distances and she gets tired and her leg starts hurting. She is also scheduled for her next round of botox to "re-straighten" her leg again- the last round has worn off...hopefully the botox will prevent us from having to get her another new brace, as the one we just got is no longer working due to the worn off botox.....ahh, the appointments just keep coming, but - DON'T QUESTION GOD'S PLAN. Yes, Larry, you are right. I will just keep rolling with it.
Thanks to all of you who continue to follow and support Julia and our families efforts for everyone!
Susan
Saturday, August 7, 2010
November 4th....
We should have some answers by November 4th....that is when the hearing is set, as both sides have not been able to come to a settlement for Julia. So a hearing as been set, in front of the Special Master, to duke it out and finish this thing up. So, I am looking forward to this being finished....it has consumed my world for three and a half years. I want it DONE. And it will be soon. What a great birthday gift - especially for my 40th... I asked if there was anything else I could do to help, and the attorney was real nice and said I have done all I can and thanked me for being so on top of everything. That was nice - epescially from the mouth of an attorney! HAHA.
So, keep Julia in your prayers for these next few months - this is it everyone!
Susan
So, keep Julia in your prayers for these next few months - this is it everyone!
Susan
Wednesday, August 4, 2010
From Exceptional Family TV.....these words are so true for my family and I today.
By Renee Charlan
I have been searching for a way,
A way to have a voice.
A way to be a voice;
A way to hear her voice.
I have been searching for a way to figure out what it is I am feeling.
To figure out if I am happy, if I am sad or if I just AM.
I have been searching for a way to be the woman I want to be,
The wife I know I can be,
To be the mom she deserves me to be.
I have been searching for a way to be a friend again,
One who laughs and loves with all her heart.
I have been searching for a way to know myself better,
To love who I am and to learn from my past.
I have been searching for people who know and understand things I go through everyday,
people who understand the loss of dreams, yet always search for hope.
I have found hope.
I have found it through the people who open their lives to us,
Through the families who have become the voice for their children.
I have found it through the strength I see in mothers who never leave their child’s side; Through the friends who are always there no matter what you’re going through.
Through the people who have experienced tragedy and have come out on the other side filled with hope and love.
I have found hope through all of you,
And I thank you so much for the love and support everyday.
I have been searching for a way,
A way to have a voice.
A way to be a voice;
A way to hear her voice.
I have been searching for a way to figure out what it is I am feeling.
To figure out if I am happy, if I am sad or if I just AM.
I have been searching for a way to be the woman I want to be,
The wife I know I can be,
To be the mom she deserves me to be.
I have been searching for a way to be a friend again,
One who laughs and loves with all her heart.
I have been searching for a way to know myself better,
To love who I am and to learn from my past.
I have been searching for people who know and understand things I go through everyday,
people who understand the loss of dreams, yet always search for hope.
I have found hope.
I have found it through the people who open their lives to us,
Through the families who have become the voice for their children.
I have found it through the strength I see in mothers who never leave their child’s side; Through the friends who are always there no matter what you’re going through.
Through the people who have experienced tragedy and have come out on the other side filled with hope and love.
I have found hope through all of you,
And I thank you so much for the love and support everyday.
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