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.
Saturday, July 31, 2010
Saying Goodbye is Never Easy
So, my most wonderful, supportive, hardworking, dedicated daycare provider is packing up her truck today and leaving tomorrow for Iowa. She has been watching Jack and Julia for just about two years now. Oh, the memories. The odd way I met her. The seizure in 9-08 followed by her calling 911 when she couldn't reach me, the firetruck and the ambulance showing up to her house (where she had to still watch and control about 6 other kids amidst the chaos) to save my baby -mind you this all happened on the second day that she had ever watched Julia. I was SURE she would not want her back after that, but when Julia was back out of the hospital, I reluctantly called her, and she was waiting with open arms for her to come back to daycare. The determination she had to make a difference in Julia's life. The hours of support she gave to me when I thought I was going to lose it over the last two years. How do you say goodbye to someone like that? Well, I got her a nice card, and gave her a generous bonus, and a big fat hug and lots of tears. I will miss her dearly.
The interesting thing is, what brought her to this move to Iowa, was her experiences with Julia, among other things of course. But Julia had such an impact on her, that she decided to look into careers helping special needs children, and to help their families. And she found the perfect job, in Iowa, where her family is, and simply could not turn it down. I understand her decision 100%, and I am proud to say that, if not for Julia, she never would have thought about this as a career. If she can help MORE kids than just my one, and help MORE families, than just mine, then - GO GET EM Dawn. You are an amazing inspiration to me.
So, hard to say goodbye, but everything happens for a reason I suppose.
I found a new daycare provider who is so super excited to help Julia. She has already told me all the wonderful things she wants to do for her. She wants to get Julia "out" into the community more to learn how to function better in social situations. She PROMISED me she would get her potty trained - we will see about that one - but she seems determined. She has watched her the last two nights and said she had no problems with her at all and that they seem to have already connected. She is persuing her undergrad in education, and then plans to get her masters in Special Education. She has worked with many autistic children (older - in their teens - and she wants to get julia to a better place sooner than these kids did). She is a dream come true so far - she even called me yesterday while I was stuck at work, and asked if she could pick up a few things that she noticed we needed for the home and kids......really??????? Seriously?????? She came an hour early yesterday to help go through all the kids clothes and get rid of the too small ones, and she bought hangers to hang up and arrange the clothes that do still fit. She sat here happily til midnight until Shawn and I got back from his 20th high school reunion last night, and then stayed til 1am just talking about how excited she was to have met us! AND, her favorite restuarant is the RIO! Her favorite music is COUNTRY, and she loves going to all the concerts that I wish I could go to! A match made in heaven I would say....
So, hard to say goodbye to my longtime friend and care provider today, but so far, easy to say hello to someone new - it will all work out!
Susan
The interesting thing is, what brought her to this move to Iowa, was her experiences with Julia, among other things of course. But Julia had such an impact on her, that she decided to look into careers helping special needs children, and to help their families. And she found the perfect job, in Iowa, where her family is, and simply could not turn it down. I understand her decision 100%, and I am proud to say that, if not for Julia, she never would have thought about this as a career. If she can help MORE kids than just my one, and help MORE families, than just mine, then - GO GET EM Dawn. You are an amazing inspiration to me.
So, hard to say goodbye, but everything happens for a reason I suppose.
I found a new daycare provider who is so super excited to help Julia. She has already told me all the wonderful things she wants to do for her. She wants to get Julia "out" into the community more to learn how to function better in social situations. She PROMISED me she would get her potty trained - we will see about that one - but she seems determined. She has watched her the last two nights and said she had no problems with her at all and that they seem to have already connected. She is persuing her undergrad in education, and then plans to get her masters in Special Education. She has worked with many autistic children (older - in their teens - and she wants to get julia to a better place sooner than these kids did). She is a dream come true so far - she even called me yesterday while I was stuck at work, and asked if she could pick up a few things that she noticed we needed for the home and kids......really??????? Seriously?????? She came an hour early yesterday to help go through all the kids clothes and get rid of the too small ones, and she bought hangers to hang up and arrange the clothes that do still fit. She sat here happily til midnight until Shawn and I got back from his 20th high school reunion last night, and then stayed til 1am just talking about how excited she was to have met us! AND, her favorite restuarant is the RIO! Her favorite music is COUNTRY, and she loves going to all the concerts that I wish I could go to! A match made in heaven I would say....
So, hard to say goodbye to my longtime friend and care provider today, but so far, easy to say hello to someone new - it will all work out!
Susan
Wednesday, July 28, 2010
Amazing DAY!
So, the news from children's wasn't so great, but not horrible either. I had a conversation with Julia's Life Care Planner after her appointment which was reassuring.
Then I had three hours to do nothing....no kids....(well laundry, but that is relaxing for me), and I had three other FANTASTIC phone calls that I think are going to affect my future greatly! I am ESTATIC tonight and hope it continues...............God has his eyes on my family lately and I hope it all works out!!!!!
Just when you think you are sinking, prayer does work!
Good night all!!!!!
Susan
Then I had three hours to do nothing....no kids....(well laundry, but that is relaxing for me), and I had three other FANTASTIC phone calls that I think are going to affect my future greatly! I am ESTATIC tonight and hope it continues...............God has his eyes on my family lately and I hope it all works out!!!!!
Just when you think you are sinking, prayer does work!
Good night all!!!!!
Susan
NeuroPsych Evaluation
We just got back from Julia's neuropsych evaluation - only took about three and a half hours instead of 4-8, so that was good. She was in FULL OUT tantrum mode when we (my mom, shawn, julia, and I) got there, so the Dr got to witness that part of it. While they did the testing on her, the Dr talked to us in a separate room about, well, everything. This woman was AMAZING. I am so glad to have been set up with her for the appointment. I think she will be an amazing advocate for Julia's case, as there are a lot of things the attorneys are not agreeing on at this point.
Good news and bad - good news first - Julia has increased her scores on the Mullen Scale in the area of gross motor function from when she was evaluated in November. Bad news, she has regressed in Visual reception, Fine Motor, Receptive Language, and Expressive Language since november. Well, we have been seeing it lately here at home and even school has mentioned it regarding the tantrums. So, there you have it. Basically she is functioning at 18-22 months....still.
So, not the best news today, but, hey, tomorrow is another day, and if we can get Julia going with some of the therapies this Dr HIGHLY recommended - primarily ABA therapy, she thinks we can get her higher. But ABA is not covered by insurance.....I have a little money saved up for her school, and could throw some at ABA for a while if I have to - just pray they will allow for this therapy in her settlement. It is pretty intensive behavior therapy - she suggested it be done daily - someone at school - and someone at home....that's going to be a pretty penny.
Well, keep her in your prayers, and may the government do the right thing by her.
Susan
Good news and bad - good news first - Julia has increased her scores on the Mullen Scale in the area of gross motor function from when she was evaluated in November. Bad news, she has regressed in Visual reception, Fine Motor, Receptive Language, and Expressive Language since november. Well, we have been seeing it lately here at home and even school has mentioned it regarding the tantrums. So, there you have it. Basically she is functioning at 18-22 months....still.
So, not the best news today, but, hey, tomorrow is another day, and if we can get Julia going with some of the therapies this Dr HIGHLY recommended - primarily ABA therapy, she thinks we can get her higher. But ABA is not covered by insurance.....I have a little money saved up for her school, and could throw some at ABA for a while if I have to - just pray they will allow for this therapy in her settlement. It is pretty intensive behavior therapy - she suggested it be done daily - someone at school - and someone at home....that's going to be a pretty penny.
Well, keep her in your prayers, and may the government do the right thing by her.
Susan
Subscribe to:
Posts (Atom)
