Dear Mr. President,
I am writing for your help. April 2nd is World Autism Awareness Day. I am asking for your help because my son has Autism. He is a wonderful, smart, sweet, and loving boy; however, he is often defined by 1 word…Autistic. 1 in 91 children in the United States are on the Autism Spectrum. 1 in 91. And that number continues to grow. What happens when those children become adults? What does that mean for our country, our economic future, THEIR future? I'm sure you are aware, but here are just a few more U.S. statistics:
US Facts:
1. A new case of Autism is diagnosed every 20 minutes.
2. There are 24,000 new cases every year.
3. The economic impact of autism is more than $90 billion and is expected to more than double in the next decade.
4. Autism receives less than 5% of the research funding of many less prevalent childhood diseases.
5. There is no medical detection or cure for autism.
Staggering, aren't they?
Mr. President, on April 2nd, I am asking for your help. I am asking for you to light up YOUR house BLUE to show your support, your compassion, your awareness for our children and the many adults who are currently living with Autism, not just in the United States, but around the world. Many international and national landmarks will take part in lighting up blue on April 2nd all around the world. I will be changing my outside bulbs to blue as well, for the month of April. I am hoping someone will ask me WHY? I am hopeful that if you, Mr. President, light YOUR house blue on April 2nd, many millions of people will ask WHY? And the conversation that is so much needed in our country will begin.
We need much more than just your support, Mr. President. We need insurance reform. We need funding for further research into environmental factors that may contribute to the onset of Autism. We need help. But all we are asking for on this day, April 2nd, is your support for our families and our fight for our children as we help them overcome their struggles to communicate, understand, and be accepted.
Mr. President, you are a father, and I wonder what you would do if one of your daughters were affected by Autism? Would you simply change your bulbs to blue for 1 day/night for them? I am positive that your answer would be ‘Yes”. The spectacular thing about lighting up YOUR house blue is that it will reach millions of people, and millions of people will become educated, and education leads to acceptance and compassion for our children.
Many mothers like me are asking you this one favor on April 2nd. Will you please stand up with us in support of our children and light up YOUR house blue?
Thank you.
3.17.2011
3.07.2011
F you.
Holden has only officially been evaluated once by the public school system - which was shortly before he turned 3 years old. Since he will be 6 on April 10th, and since it has been 3 years since the last eval, they have done another one. Over the past 2 weeks, they have sent home all of the evaluation results separately. I always have a white envelope with "The parent of Holden Block" on the outside. Friday, they sent home a pretty comprehensive one, detailing his IQ level, etc. His Nonverbal IQ is 93, Verbal IQ is 59, for a Full Scale IQ of 75. I know it's a large descrepency between the Nonverbal and Verbal - but, hey, he has communication problems, so, of course it is. Also on Friday, I got the notice for his IEP meeting, which is this Wednesday, March 9th @ 8:30am. Joy.
Today when I dropped him off, his aide handed me yet another white envelope. This one showed another evaluation and its results. The results of this one? That my almost 6 year old is at a 3 year, 1 month level in development.
F you, Monday. F you, this week, actually. And F you, Autism.
Today when I dropped him off, his aide handed me yet another white envelope. This one showed another evaluation and its results. The results of this one? That my almost 6 year old is at a 3 year, 1 month level in development.
F you, Monday. F you, this week, actually. And F you, Autism.
1.13.2011
Dr. Andrew Wakefield responds....
Click on the title of this post to go to Dr. Wakefield's response to the recent "allegations" of his study regarding children with autism and vaccines. We need more people like Dr. Wakefield in the Autism community.
1.06.2011
Medical journal: Study linking autism, vaccines is 'elaborate fraud'
This article (linked in the title of this post) pisses me off for a few reasons. First of all, releasing a story like this now - while the push is being done for flu shots - is coincidence? Maybe. Maybe not. It's a fact that more people are choosing to delay vaccinations, or deny them all together, especially the flu shot. Another reason this pisses me off is the statement made by Dr. Max Wiznitzer, which goes a little like this..."Unfortunately, his core group of supporters is not going to let the facts dissuade their beliefs that MMR causes autism," Wiznitzer said. "They need to be open-minded and examine the information as everybody else." First, Dr. Wiznitzer, this study never shaped my opinion of vaccines or what happened to my child. And I know I cannot be alone in saying this. I didn't even know about this study until after I watched my son regress in a mere 48 hours after receiving 4 vaccines in 1 doctors visit - which he was sick and running a fever, I might add. I was assured that he would be "just fine". He wasn't. I have been looking for answers since then as to what happened to my son? Why was he talking and then stopped? Why was he healthy, and then all of a sudden has horrible stomach issues? Why did he no longer interact with me? I had a lot of questions, and no one seemed able to answer them, and frankly, didn't seem interested in helping me find the answers to those questions.
So, the fact that Dr. Wakefield conducted a study with 12 "subjects" where some information may have been altered? Is that really the issue? I don't think there are millions of parents basing their decision on to vaccinate or not to vaccinate on this ONE study and Dr. Wakefield's opinion. I think their decisions are based on information they have gathered from talking to other mothers whos children have been affected by vaccines. And other medical professionals who cannot clearly and definitively tell you that vaccines have nothing to do with Autism.
For example: Hannah Poling (http://www.cbsnews.com/8301-31727_162-20015982-10391695.html). Time magazine states: ...(T)here's no denying that the court's decision to award damages to the Poling family puts a chink -- a question mark -- in what had been an unqualified defense of vaccine safety with regard to autism. If Hannah Poling had an underlying condition that made her vulnerable to being harmed by vaccines, it stands to reason that other children might also have such vulnerabilities."
So, although I guess you could qualify me as a supporter of Dr. Andrew Wakefield (simply for putting this out into the media and forcing questions to be asked), his small study that has costs him his medical license and has made the front page of CNN news, I make my decisions about vaccine safety based on the facts - from other parents, from court cases, from my experience as a mother raising a child with Autism.
So, the fact that Dr. Wakefield conducted a study with 12 "subjects" where some information may have been altered? Is that really the issue? I don't think there are millions of parents basing their decision on to vaccinate or not to vaccinate on this ONE study and Dr. Wakefield's opinion. I think their decisions are based on information they have gathered from talking to other mothers whos children have been affected by vaccines. And other medical professionals who cannot clearly and definitively tell you that vaccines have nothing to do with Autism.
For example: Hannah Poling (http://www.cbsnews.com/8301-31727_162-20015982-10391695.html). Time magazine states: ...(T)here's no denying that the court's decision to award damages to the Poling family puts a chink -- a question mark -- in what had been an unqualified defense of vaccine safety with regard to autism. If Hannah Poling had an underlying condition that made her vulnerable to being harmed by vaccines, it stands to reason that other children might also have such vulnerabilities."
So, although I guess you could qualify me as a supporter of Dr. Andrew Wakefield (simply for putting this out into the media and forcing questions to be asked), his small study that has costs him his medical license and has made the front page of CNN news, I make my decisions about vaccine safety based on the facts - from other parents, from court cases, from my experience as a mother raising a child with Autism.
12.19.2010
Thoughts
I have a confession to make. I haven't even logged into my blog in over a year. But I had a conversation this morning and it brought back some memories of old feelings and thoughts and it made me realize that I've finally gotten "there".
When Holden was first diagnosed, and even for the 2 years that followed, I always wondered how other mothers did it. How they didn't stress or obsess constantly about their child's future. How they accepted things and took the "let's make the best of it" mentality. I just thought there's NO way I'll ever be okay with not knowing about his future and where he will be when he's 18, or 19, or 20.
Over the past year, a lot has happened. My marriage ended. The kids and I have moved back to Florida (home). I'm living in a small town I said I would never come back to settle down in (which, by the way, I'm not settling - I'm moving back to Orlando in the summer!). But, anyway, you get the point. A LOT has happened.
But, something else happened, too. Holden started typical kindergarten this year. I'll be honest and say the only reason I chose public school for him this year is because I want to apply for the Florida McKay Scholarship, which allows funding for private schools, and also gives you more freedom of where to send your special needs child. And, in order to apply, they have to be in public school for 1 year. So, I chose this year. I thought it would be better for him. Kindergarten, the children are still somewhat accepting of disabilities, and aren't as quick to make fun, and laugh at other children. So, those are my reasons for doing it. However, whatever the reasons are ... the fact remains that HE IS IN A TYPICAL KINDERGARTEN CLASS. I never thought I would say those words 3 years ago. He's having some challenges, sure, but overall, he's managing. And, he's adjusting slowly, but he's still adjusting.
Which brings me to my conversation I was having this morning. Someone said to me "it wasn't supposed to be this way". I had an Oprah "ah ha!" moment. Because, it's never supposed to be this way. No one knows that better than me. Holden wasn't supposed to have autism. He was supposed to be my boy, my oldest boy, who grew up to go to college (University of Florida, preferrably!), be a doctor, get married, and give me grandkids. But he didn't. So, I've had to make some adjustments myself over the past 3 years to the way I think. It's no longer about my insecurities, it's about overcoming them.
I think I'm finally "there". At that place where I take things one day at a time. And, a place that I've found acceptance that even though "it wasn't supposed to be this way"...it is this way. And I've learned to accept autism. I'll NEVER like autism, and I'll also NEVER give up on overcoming autism. But I've accepted it. And I've also accepted a very uncertain future for my boy and the fact that my life's mission will always be to make my children's future as certain as I possibly can. For example, I read about a new study last week where researchers have found that a drug that's approved to treat tuberculosis may also increase social skills in people with autism. I emailed the doctor who is overseeing the clinical trial and offered my son as a "guinea pig", so to speak. I asked if they were doing a clinical trial on children his age. She emailed me back immediately and said they were starting with an older population and then focusing on younger children after that trial is complete, and they are extremly hopeful that this will help people affected with autism. I told her to save my contact information.
So, instead of stressing about Holden's future, I have decided to do everything possible for him - and do what used to come the hardest for me. Wait and see. I think I'm finally "there".
When Holden was first diagnosed, and even for the 2 years that followed, I always wondered how other mothers did it. How they didn't stress or obsess constantly about their child's future. How they accepted things and took the "let's make the best of it" mentality. I just thought there's NO way I'll ever be okay with not knowing about his future and where he will be when he's 18, or 19, or 20.
Over the past year, a lot has happened. My marriage ended. The kids and I have moved back to Florida (home). I'm living in a small town I said I would never come back to settle down in (which, by the way, I'm not settling - I'm moving back to Orlando in the summer!). But, anyway, you get the point. A LOT has happened.
But, something else happened, too. Holden started typical kindergarten this year. I'll be honest and say the only reason I chose public school for him this year is because I want to apply for the Florida McKay Scholarship, which allows funding for private schools, and also gives you more freedom of where to send your special needs child. And, in order to apply, they have to be in public school for 1 year. So, I chose this year. I thought it would be better for him. Kindergarten, the children are still somewhat accepting of disabilities, and aren't as quick to make fun, and laugh at other children. So, those are my reasons for doing it. However, whatever the reasons are ... the fact remains that HE IS IN A TYPICAL KINDERGARTEN CLASS. I never thought I would say those words 3 years ago. He's having some challenges, sure, but overall, he's managing. And, he's adjusting slowly, but he's still adjusting.
Which brings me to my conversation I was having this morning. Someone said to me "it wasn't supposed to be this way". I had an Oprah "ah ha!" moment. Because, it's never supposed to be this way. No one knows that better than me. Holden wasn't supposed to have autism. He was supposed to be my boy, my oldest boy, who grew up to go to college (University of Florida, preferrably!), be a doctor, get married, and give me grandkids. But he didn't. So, I've had to make some adjustments myself over the past 3 years to the way I think. It's no longer about my insecurities, it's about overcoming them.
I think I'm finally "there". At that place where I take things one day at a time. And, a place that I've found acceptance that even though "it wasn't supposed to be this way"...it is this way. And I've learned to accept autism. I'll NEVER like autism, and I'll also NEVER give up on overcoming autism. But I've accepted it. And I've also accepted a very uncertain future for my boy and the fact that my life's mission will always be to make my children's future as certain as I possibly can. For example, I read about a new study last week where researchers have found that a drug that's approved to treat tuberculosis may also increase social skills in people with autism. I emailed the doctor who is overseeing the clinical trial and offered my son as a "guinea pig", so to speak. I asked if they were doing a clinical trial on children his age. She emailed me back immediately and said they were starting with an older population and then focusing on younger children after that trial is complete, and they are extremly hopeful that this will help people affected with autism. I told her to save my contact information.
So, instead of stressing about Holden's future, I have decided to do everything possible for him - and do what used to come the hardest for me. Wait and see. I think I'm finally "there".
11.06.2009
Wishes
It's been almost a month since I've updated. And then, it wasn't really an update; but more of a rant about the numbers of Autism that had been published by a new study. Everytime I see something like that, and it seems to "shock" people - it's extremely irritating to me. Because, DUH, we know. Those of us who live it, breathe it, and dream it ... already know the numbers. We already know how many lives are affected. It's everyone else who has to catch up.
I was dropping Holden off at school today and I realized to myself that I think the same thing every morning. As he's getting out of the car and his therapist makes him say "bye, mom" - I think to myself how I would do anything to make things easier for him. I would give up everything that makes me happy, if he could be a "typical" 4 year old and not have to work SO hard at absolutely everything he does. That's the part that seems so unfair. He's been "working" non-stop since he was 2 years old. All because learning doesn't come naturally, all because he was chosen, for whatever reason, to be an example of what Autism really is.
He continues to make progress, and every once in a while, I get a slight glimpse of what he would be like if he didn't have Autism. He's done a few things that seem so "typical", I guess you could say. I can't help but want so much more for him though. I celebrate the small things, such as him getting excited when he's playing with a toy and saying "OH MAN!" as he plays, or him handing another kid a toy and saying "here you go", or his eyes looking into mine and him smiling. Simple, everyday things that kids just instinctively DO. Simple things that are so hard for him to just learn how to do.
I was reading something another mom wrote, where her son with Autism asked her "Mom, will I get married one day?", and something in my heart ached. I've often wondered the same. Holden's future is so uncertain, and I've tried to learn to live one day at a time; but sometimes, I can't help but wonder what his future will be like. Will he have friends? Will he go on dates? Will he have a girlfriend? Go to college? Work? Will he be happy? I hope, hope, hope that the answer is "yes".
I was dropping Holden off at school today and I realized to myself that I think the same thing every morning. As he's getting out of the car and his therapist makes him say "bye, mom" - I think to myself how I would do anything to make things easier for him. I would give up everything that makes me happy, if he could be a "typical" 4 year old and not have to work SO hard at absolutely everything he does. That's the part that seems so unfair. He's been "working" non-stop since he was 2 years old. All because learning doesn't come naturally, all because he was chosen, for whatever reason, to be an example of what Autism really is.
He continues to make progress, and every once in a while, I get a slight glimpse of what he would be like if he didn't have Autism. He's done a few things that seem so "typical", I guess you could say. I can't help but want so much more for him though. I celebrate the small things, such as him getting excited when he's playing with a toy and saying "OH MAN!" as he plays, or him handing another kid a toy and saying "here you go", or his eyes looking into mine and him smiling. Simple, everyday things that kids just instinctively DO. Simple things that are so hard for him to just learn how to do.
I was reading something another mom wrote, where her son with Autism asked her "Mom, will I get married one day?", and something in my heart ached. I've often wondered the same. Holden's future is so uncertain, and I've tried to learn to live one day at a time; but sometimes, I can't help but wonder what his future will be like. Will he have friends? Will he go on dates? Will he have a girlfriend? Go to college? Work? Will he be happy? I hope, hope, hope that the answer is "yes".
10.05.2009
seriously???
Click on the title (seriously???) for the link to the CNN video:
FINALLY, something in the news to create some sort of "panic" among the CDC. Course, we'll have to wait and see what they do about it. I'm thinking they'll wait until these numbers double, or even triple, before they choose to really do something about it. Because, doing something about it ... means they will have to look at even more possible causes of autism. Environmental factors, overloading a child's system with too many vaccines too soon...and we all know the CDC and AAP will never allow that to happen.
Instead, they'll excuse it away. "Better diagnosis", "more awareness", "doctors are more willing to diagnose a child with autism today". We've heard it all, and will continue to hear it all until we all stand up and keep asking questions and making a 'stink' about these crazy numbers!
Mr. President - YES, we DO have a healthcare crisis in this country. We have an epidemic. It's caused AUTISM. 1 in 91 children. 1 in 58 boys. And as these numbers continue to GROW at an alarming rate? We can expect even more than 1 in 58 ADULTS with autism in our future. We haven't seen anything yet ......
FINALLY, something in the news to create some sort of "panic" among the CDC. Course, we'll have to wait and see what they do about it. I'm thinking they'll wait until these numbers double, or even triple, before they choose to really do something about it. Because, doing something about it ... means they will have to look at even more possible causes of autism. Environmental factors, overloading a child's system with too many vaccines too soon...and we all know the CDC and AAP will never allow that to happen.
Instead, they'll excuse it away. "Better diagnosis", "more awareness", "doctors are more willing to diagnose a child with autism today". We've heard it all, and will continue to hear it all until we all stand up and keep asking questions and making a 'stink' about these crazy numbers!
Mr. President - YES, we DO have a healthcare crisis in this country. We have an epidemic. It's caused AUTISM. 1 in 91 children. 1 in 58 boys. And as these numbers continue to GROW at an alarming rate? We can expect even more than 1 in 58 ADULTS with autism in our future. We haven't seen anything yet ......
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