A Question About Autism...

[sophie]

This is the most bizarre logic I have ever seen or heard. By your "logic", Abrianna, you don't think children dying of AIDS are important because you don't support them financially or with your time.

Just wow.

 

[GoldDust Woman]

I think money given to Autism Research has nothing to do w/ money given to Cancer Research. If someone is personally effected by one and not the other then obviously they're going to give to that cause. And, on the flip side, if someone isn't personally effected by let's say Autism that doesn't mean that money would go to Cancer Research. Your not pulling money out of Cancer Research's pocket to put it in Autism Research's pocket.

Children w/ cancer have the blessing of the Ronald McDonald House and St. Johns (I hope I got that name right) hospital. What are the groups that do the same for Autistm patients??? Oh yeah...nobody knows. I am BY NO MEANS minimizing what cancer patients go through (my grandfather passed away due to Cancer...I donate to BOTH causes) but the fact is that there is a lot known about cancer while we still have uneducated people out there spouting off that Autism is a fake illness and is just the result of lazy parenthood (Dennis Leary, anyone???).

The name of the hospital, Tasha, is St. Judes. :nod:

I'm chiming in late, but I feel as though I have a life's experience to share, as far as money donated, and how, it REALLY goes.

As many here know, I lost my only child to cancer. She was 2 months shy of turning 22 years old, when she passed away. During her illness, I found that I came up against many, many walls, when it came to assistance. We didn't need financial assistance, but, we needed housing assistance. Here's my story...

I live in Southwest Missouri. The type of cancer my daughter was diagnosed with was very rare. Due to that fact, we had to go to Houston, Texas, to MD Anderson Cancer Center, for her care. Our first visit, lasted 6 weeks. Thankfully, I have friends in Houston, who we stayed with. (This lifelong friend had come up here to be with me when my daughters tests were being done to find out what was wrong with her.) Once we got the diagnosis, she loaded us up into her van and took us home with her. (Leaving my vehicle behind.) As thankful as I was to my friend, to plop yourself down into the best of friends homes for 6 weeks isn't a nice thing to do under normal circumstances. :ninja Now toss into the mix, our 3 year old toddler.

I found during our 6 week stay, that my daughter, myself, and my grandson needed our own space from time to time, away from my dear friend who took us in. I reached out to the American Cancer Society. Now, listen up people, this is an eye opener for sure!
I was told by the ACS of Houston that since we had come to Houston for care, and were NOT residents, they couldn't "offer" any services to us, that I needed to contact my local ACS in Missouri. :eek WTF could the Missouri ACS do for me and my dying daughter, while I was in Texas? Not a damn thing! So, I then reached out to the Ronald McDonald House, near MD Anderson. Guess what? They couldn't help us either because my daughter was 21. :willy_nilly: I couldn't believe that my daughter's age made us in-eligible.

So, if you're going to get cancer, and hope that the Ronald McDonald Houses are going to help you, BE SURE to get that cancer before turning 18!!! :mad
It was the biggest mess I'd ever encountered.

6 weeks later, MD Anderson released us to come home... on a 2 week pass, to see our family and friends, give my daughter a respite, and then we were to return. Dilemma! I didn't have my vehicle with me. :ninja There was no way I was going to ask my friend to drive us back home, 10 hours, after we'd already way overstayed our welcome. I contacted the angel network and we were flown home free, on a corporate jet. Corporate Angel Network - Home

5 days later, found us back in our local hospital, with a very serious blood clot. (Don't fly after you've had surgery!) 4 days after that, my daughter was air lifted, in a coma, to Columbia, Missouri... 4 hours away from home! I farmed off my toddling grandson to some very dear friends, and through my tear stained face, my brother drove me to Columbia.

Things were VERY different in Columbia! They couldn't do enough for us. The Ronald McDonald House put us up for 4 weeks. The Doctors there arranged our stay, so maybe that made the difference? To this day, I still don't know, but I am thankful. Also... for a second time, the angel network flew us home.

Did the ACS of Southwest Missouri help us at all? That would be an emphatic and resounding... NO.

My daughter lost her battle, November 14th, 2001.

After that, I brought the Relay for Life to my town. I was on the front page of our newspapers... I brought in the most donations... my team won many awards and LOTS of money for the ACS. This was my way of giving back. But! I gave back to the wrong charity as far as I'm concerned. The Relay for Life in my town, is now a yearly event... but, they don't help cancer patients, I'm here to tell you.

What the ACS does offer to cancer patients is... ONE case of Ensure a month... and a 50 dollar gas card, ONCE a YEAR. :eek

The moral to my story is this. When you're making donations to the charity of your choice, please, be careful. Stay away from the money mongering corporations, and make your donations to those places who REALLY make a difference.

My donations now go directly to MD Anderson Cancer Center (who totally rock), as well as the Ronald McDonald house of Columbia, Missouri.

Sorry to be so windy! But, thanks for reading me.

 

[Jersey]

Thanks for being so windy. I had not heard your entire story before and thank you for sharing. I'm sorry for the loss of your daughter. i can't begin to imagine what that must be like.

 

[Goddess]

Thanks for being so windy. I had not heard your entire story before and thank you for sharing. I'm sorry for the loss of your daughter. i can't begin to imagine what that must be like.

:homo:

 

[Goat Whisperer]

The name of the hospital, Tasha, is St. Judes. :nod:

I'm chiming in late, but I feel as though I have a life's experience to share, as far as money donated, and how, it REALLY goes.

As many here know, I lost my only child to cancer. She was 2 months shy of turning 22 years old, when she passed away. During her illness, I found that I came up against many, many walls, when it came to assistance. We didn't need financial assistance, but, we needed housing assistance. Here's my story...

I live in Southwest Missouri. The type of cancer my daughter was diagnosed with was very rare. Due to that fact, we had to go to Houston, Texas, to MD Anderson Cancer Center, for her care. Our first visit, lasted 6 weeks. Thankfully, I have friends in Houston, who we stayed with. (This lifelong friend had come up here to be with me when my daughters tests were being done to find out what was wrong with her.) Once we got the diagnosis, she loaded us up into her van and took us home with her. (Leaving my vehicle behind.) As thankful as I was to my friend, to plop yourself down into the best of friends homes for 6 weeks isn't a nice thing to do under normal circumstances. :ninja Now toss into the mix, our 3 year old toddler.

I found during our 6 week stay, that my daughter, myself, and my grandson needed our own space from time to time, away from my dear friend who took us in. I reached out to the American Cancer Society. Now, listen up people, this is an eye opener for sure!
I was told by the ACS of Houston that since we had come to Houston for care, and were NOT residents, they couldn't "offer" any services to us, that I needed to contact my local ACS in Missouri. :eek WTF could the Missouri ACS do for me and my dying daughter, while I was in Texas? Not a damn thing! So, I then reached out to the Ronald McDonald House, near MD Anderson. Guess what? They couldn't help us either because my daughter was 21. :willy_nilly: I couldn't believe that my daughter's age made us in-eligible.

So, if you're going to get cancer, and hope that the Ronald McDonald Houses are going to help you, BE SURE to get that cancer before turning 18!!! :mad
It was the biggest mess I'd ever encountered.

6 weeks later, MD Anderson released us to come home... on a 2 week pass, to see our family and friends, give my daughter a respite, and then we were to return. Dilemma! I didn't have my vehicle with me. :ninja There was no way I was going to ask my friend to drive us back home, 10 hours, after we'd already way overstayed our welcome. I contacted the angel network and we were flown home free, on a corporate jet. Corporate Angel Network - Home

5 days later, found us back in our local hospital, with a very serious blood clot. (Don't fly after you've had surgery!) 4 days after that, my daughter was air lifted, in a coma, to Columbia, Missouri... 4 hours away from home! I farmed off my toddling grandson to some very dear friends, and through my tear stained face, my brother drove me to Columbia.

Things were VERY different in Columbia! They couldn't do enough for us. The Ronald McDonald House put us up for 4 weeks. The Doctors there arranged our stay, so maybe that made the difference? To this day, I still don't know, but I am thankful. Also... for a second time, the angel network flew us home.

Did the ACS of Southwest Missouri help us at all? That would be an emphatic and resounding... NO.

My daughter lost her battle, November 14th, 2001.

After that, I brought the Relay for Life to my town. I was on the front page of our newspapers... I brought in the most donations... my team won many awards and LOTS of money for the ACS. This was my way of giving back. But! I gave back to the wrong charity as far as I'm concerned. The Relay for Life in my town, is now a yearly event... but, they don't help cancer patients, I'm here to tell you.

What the ACS does offer to cancer patients is... ONE case of Ensure a month... and a 50 dollar gas card, ONCE a YEAR. :eek

The moral to my story is this. When you're making donations to the charity of your choice, please, be careful. Stay away from the money mongering corporations, and make your donations to those places who REALLY make a difference.

My donations now go directly to MD Anderson Cancer Center (who totally rock), as well as the Ronald McDonald house of Columbia, Missouri.

Sorry to be so windy! But, thanks for reading me.

I hope I never have to lose a child. Especially in such a dramatic way

 

[HottyToddyChick]

Wow, Gold. I am so sorry for your lost, and like Abrianna said, that it was in such a dramatic way.

I had never heard the whole story either, and it definitely opened my eyes. Thanks for sharing.

*hug*

 

[Dana]

The name of the hospital, Tasha, is St. Judes. :nod:

I'm chiming in late, but I feel as though I have a life's experience to share, as far as money donated, and how, it REALLY goes.

As many here know, I lost my only child to cancer. She was 2 months shy of turning 22 years old, when she passed away. During her illness, I found that I came up against many, many walls, when it came to assistance. We didn't need financial assistance, but, we needed housing assistance. Here's my story...

I live in Southwest Missouri. The type of cancer my daughter was diagnosed with was very rare. Due to that fact, we had to go to Houston, Texas, to MD Anderson Cancer Center, for her care. Our first visit, lasted 6 weeks. Thankfully, I have friends in Houston, who we stayed with. (This lifelong friend had come up here to be with me when my daughters tests were being done to find out what was wrong with her.) Once we got the diagnosis, she loaded us up into her van and took us home with her. (Leaving my vehicle behind.) As thankful as I was to my friend, to plop yourself down into the best of friends homes for 6 weeks isn't a nice thing to do under normal circumstances. :ninja Now toss into the mix, our 3 year old toddler.

I found during our 6 week stay, that my daughter, myself, and my grandson needed our own space from time to time, away from my dear friend who took us in. I reached out to the American Cancer Society. Now, listen up people, this is an eye opener for sure!
I was told by the ACS of Houston that since we had come to Houston for care, and were NOT residents, they couldn't "offer" any services to us, that I needed to contact my local ACS in Missouri. :eek WTF could the Missouri ACS do for me and my dying daughter, while I was in Texas? Not a damn thing! So, I then reached out to the Ronald McDonald House, near MD Anderson. Guess what? They couldn't help us either because my daughter was 21. :willy_nilly: I couldn't believe that my daughter's age made us in-eligible.

So, if you're going to get cancer, and hope that the Ronald McDonald Houses are going to help you, BE SURE to get that cancer before turning 18!!! :mad
It was the biggest mess I'd ever encountered.

6 weeks later, MD Anderson released us to come home... on a 2 week pass, to see our family and friends, give my daughter a respite, and then we were to return. Dilemma! I didn't have my vehicle with me. :ninja There was no way I was going to ask my friend to drive us back home, 10 hours, after we'd already way overstayed our welcome. I contacted the angel network and we were flown home free, on a corporate jet. Corporate Angel Network - Home

5 days later, found us back in our local hospital, with a very serious blood clot. (Don't fly after you've had surgery!) 4 days after that, my daughter was air lifted, in a coma, to Columbia, Missouri... 4 hours away from home! I farmed off my toddling grandson to some very dear friends, and through my tear stained face, my brother drove me to Columbia.

Things were VERY different in Columbia! They couldn't do enough for us. The Ronald McDonald House put us up for 4 weeks. The Doctors there arranged our stay, so maybe that made the difference? To this day, I still don't know, but I am thankful. Also... for a second time, the angel network flew us home.

Did the ACS of Southwest Missouri help us at all? That would be an emphatic and resounding... NO.

My daughter lost her battle, November 14th, 2001.

After that, I brought the Relay for Life to my town. I was on the front page of our newspapers... I brought in the most donations... my team won many awards and LOTS of money for the ACS. This was my way of giving back. But! I gave back to the wrong charity as far as I'm concerned. The Relay for Life in my town, is now a yearly event... but, they don't help cancer patients, I'm here to tell you.

What the ACS does offer to cancer patients is... ONE case of Ensure a month... and a 50 dollar gas card, ONCE a YEAR. :eek

The moral to my story is this. When you're making donations to the charity of your choice, please, be careful. Stay away from the money mongering corporations, and make your donations to those places who REALLY make a difference.

My donations now go directly to MD Anderson Cancer Center (who totally rock), as well as the Ronald McDonald house of Columbia, Missouri.

Sorry to be so windy! But, thanks for reading me.

I'm sorry for your loss. My mother was also in your predicament when I was first diagnosed with Hydrocephus & Dandy Walker Syndrome. I was brought to the city of Portland here in Maine. I could have got free admitance to Shiners Hospital but the nearest was in Maryland. My mother called upon the Ronald McDonald House like yourself but was denied. She called upon Red Cross but all they do is LOAN you the money and you have to pay it back. I was a newborn, born with the disease so you know how hard it must have been for my mother who was almost 19 at the time. I guess my mother found out years later that the Ronald McDonald House changed their guidelines for what sicknesses they cover or whatever. I've donated once when asked in a big box store other than that, if I don't know where the money is going my family will not donate money. The only exception is I have donated some change or a few dollars to the Salvation Army during Christmas to the people with the bells. I had a former boss that was doing it last year so that was a bit different.

 

[333halfabeast]

Sorry for your loss Gold. And thank you for sharing.

 

[Natasha]

Sorry to be so windy! But, thanks for reading me.

Thank you for sharing your story. Although I knew that you had lost a child I didn't know the circumstances. I'm very sorry for your loss and, also, the roadblocks that you encountered while trying to obtain help. Thank you for naming names...I will keep that in mind when I make my next donation.

 

[GoldDust Woman]

Thank you for the warm sentiments, everyone.

I didn't tell my story in order to solicit sympathy... it was meant to draw attention to donating to causes.

Take Veronica and Jersey for example. What Jersey does is a wonderful thing. If people want to help Autism, how about making a donation to Jersey's employer so they can purchase the tools necessary to help these children. Just a thought.

As for Veronica... she's taking donations for her Walk for Autism. Click her link and send money. In all honesty, I haven't donated to her cause, yet... simply because I don't know who the donation goes to, and just how it's allocated to HELP those with Autism. V? Input, please?

 

[Jersey]

YAY- donate to my school!!! :willy_nilly:

Seriously though, I'm not exactly sure how the money donated to the Walk Now events is spent. I'll look into it and let yas know though

 

[GoldDust Woman]

Seriously though, I'm not exactly sure how the money donated to the Walk Now events is spent. I'll look into it and let yas know though

Awesome. :clap

 

[333halfabeast]

I do a lot of charity events throughout the year, but I always assumed the money was being spent right. Lots of walks and runs and bike rides and things. I wouldn't know where to begin to find out where the money goes to.

 

[Jersey]

From the Autism Speaks website.. a bit vague, but an idea none the less..

Support a Program


Autism Speaks’ programs fall into four major areas: Science; Family and Community Services; Advocacy; Awareness. You can direct your donation to one of these areas.*

Science - Autism Speaks is the leading non-governmental source of autism research support. We fund the very best scientists at leading research institutions. Our portfolio includes studies on the causes of autism: the biology of autism: improved diagnostics; and better therapies. Autism Speaks also manages targeted programs such as the Autism Genome Project; the Autism Treatment Network; and the Autism Genetic Resource Exchange.

Family and Community Services - Autism Speaks’ Family and Community Services Program augments the hundreds of local organizations across the country providing direct therapeutic and support services. We award grants to enable many of these organizations to provide additional services. We also produce resources such as the First 100 Days Kit (for newly diagnosed families); the School Community Took Kit (to help schools embrace children with autism); and the First Responders Tool Kit (to help police, firefighters, emergency technicians, and others to identify and assist individuals with autism in crisis situations).

Advocacy - Autism Speaks is working tirelessly to influence the federal government and state governments to enact policies to help families living with autism. The Combating Autism Act of 2006 is a landmark piece of legislation that provides $970 million over the next five years in federal support for research and services. Attention is now focused on insurance reform in each state. To date, eight states have passed laws requiring insurance companies to pay for autism-related therapy.

Awareness - Building awareness of autism is the key to early diagnosis and intervention, to rallying public support and passing legislation, and to raising money. The conerstone of Autism Speaks' awareness program is our ad campaign run in conjunction with the Ad Council, a no-profit agency that secures free print and electronic media space. Autism Speaks has since 2006 received tens of millions of dollars in free advertising. But funding is needed to produce quality ad materials. Autism Speaks' website also fall under the awareness program. The website provides vital information for the entire autism community.

 

[GoldDust Woman]

970 million for "research and services"! Who's doing the research and what are the services, other than the "First 100 Days Kit? Who's the CEO? 100 days is nothing, when dealing with the lifetime of the child and the family.

Do you know who the founder of "Autism Speaks" is, Jersey?

 

[Jersey]

The co-founders are Bob and Suzanne Wright. I've met Suzanne... Bob is a bit more elusive it seems.

 

[BadBoy@TheWheel]

This is simple, and I am going to respond out of my own experience, and I don't consider my experience a debate....We can argue about opinion, not experience.

I have a child with autism, hence my wife and I spend a lot of time dedicated to the cause of finding answers for children with autism, and spnd a lot of money out of pocket for therapy and research.

I don't care what you have read, or what you have heard. Until you have spent weeks, and months living on 30 minutes of sleep, 8-10 hours in a home with your child screaming at the top of his/her lungs because they cannot communicate, but want something and you cannot figure out what that is, overflowed bathtubs, dumped everything in the pantry on the floor, hit themselves, hit you and up until the time they were 7 you were still changing diapers, then frankly you don't know anything about raising a child, let alone an autistic child.

On that note, I could care less about your opinion about it.

On the topic of money, and where it's directed, I have every right to channel the money I donate to whomever I want, and that is the business of nobody, cancer has the largest advocacy of any other illnes I know of, and my mother still died from it. Every year my wife and I continue to donate a particular sum of money to a cancer charity that my mother would have wanted us to.

Again, it's by choice. One thing you cannot do, is legislate charity, nor can you dictate how someone should feel about a certain cause.

And until you have a child of your own, and experience a disability affect you personally, never....And I mean never suggest in any way, that the pain and suffering of anyone, is more important than the pain and suffering of your own flesh and blood.

 

[BadBoy@TheWheel]

And my post above was not aimed directly at anyone, meant to hurt the feelings of, nor insult any member of this forum.

Strictly my belief system in general, and I would have said that in person to anyone that I was discussing this subject with.

 

[Veronica]

good post evan!

 

[RedRyder]

The name of the hospital, Tasha, is St. Judes. :nod:

I'm chiming in late, but I feel as though I have a life's experience to share, as far as money donated, and how, it REALLY goes.

As many here know, I lost my only child to cancer. She was 2 months shy of turning 22 years old, when she passed away. During her illness, I found that I came up against many, many walls, when it came to assistance. We didn't need financial assistance, but, we needed housing assistance. Here's my story...

I live in Southwest Missouri. The type of cancer my daughter was diagnosed with was very rare. Due to that fact, we had to go to Houston, Texas, to MD Anderson Cancer Center, for her care. Our first visit, lasted 6 weeks. Thankfully, I have friends in Houston, who we stayed with. (This lifelong friend had come up here to be with me when my daughters tests were being done to find out what was wrong with her.) Once we got the diagnosis, she loaded us up into her van and took us home with her. (Leaving my vehicle behind.) As thankful as I was to my friend, to plop yourself down into the best of friends homes for 6 weeks isn't a nice thing to do under normal circumstances. :ninja Now toss into the mix, our 3 year old toddler.

I found during our 6 week stay, that my daughter, myself, and my grandson needed our own space from time to time, away from my dear friend who took us in. I reached out to the American Cancer Society. Now, listen up people, this is an eye opener for sure!
I was told by the ACS of Houston that since we had come to Houston for care, and were NOT residents, they couldn't "offer" any services to us, that I needed to contact my local ACS in Missouri. :eek WTF could the Missouri ACS do for me and my dying daughter, while I was in Texas? Not a damn thing! So, I then reached out to the Ronald McDonald House, near MD Anderson. Guess what? They couldn't help us either because my daughter was 21. :willy_nilly: I couldn't believe that my daughter's age made us in-eligible.

So, if you're going to get cancer, and hope that the Ronald McDonald Houses are going to help you, BE SURE to get that cancer before turning 18!!! :mad
It was the biggest mess I'd ever encountered.

6 weeks later, MD Anderson released us to come home... on a 2 week pass, to see our family and friends, give my daughter a respite, and then we were to return. Dilemma! I didn't have my vehicle with me. :ninja There was no way I was going to ask my friend to drive us back home, 10 hours, after we'd already way overstayed our welcome. I contacted the angel network and we were flown home free, on a corporate jet. Corporate Angel Network - Home

5 days later, found us back in our local hospital, with a very serious blood clot. (Don't fly after you've had surgery!) 4 days after that, my daughter was air lifted, in a coma, to Columbia, Missouri... 4 hours away from home! I farmed off my toddling grandson to some very dear friends, and through my tear stained face, my brother drove me to Columbia.

Things were VERY different in Columbia! They couldn't do enough for us. The Ronald McDonald House put us up for 4 weeks. The Doctors there arranged our stay, so maybe that made the difference? To this day, I still don't know, but I am thankful. Also... for a second time, the angel network flew us home.

Did the ACS of Southwest Missouri help us at all? That would be an emphatic and resounding... NO.

My daughter lost her battle, November 14th, 2001.

After that, I brought the Relay for Life to my town. I was on the front page of our newspapers... I brought in the most donations... my team won many awards and LOTS of money for the ACS. This was my way of giving back. But! I gave back to the wrong charity as far as I'm concerned. The Relay for Life in my town, is now a yearly event... but, they don't help cancer patients, I'm here to tell you.

What the ACS does offer to cancer patients is... ONE case of Ensure a month... and a 50 dollar gas card, ONCE a YEAR. :eek

The moral to my story is this. When you're making donations to the charity of your choice, please, be careful. Stay away from the money mongering corporations, and make your donations to those places who REALLY make a difference.

My donations now go directly to MD Anderson Cancer Center (who totally rock), as well as the Ronald McDonald house of Columbia, Missouri.

Sorry to be so windy! But, thanks for reading me.

Thank you for sharing this private piece of your life. It will make a difference to those that read it and are able to donate to charity. Everyone should know exactly where their donations go and how they are spent and most importantly who is really helped and how.

*Hugs* and *Loads of Love*