As I clean my 10 year old eMachine (or what was formerly called the kids computer until the laptop bit the dust a few months back) tonight, I was amused to find a link to Autism Speaks 2006 tax return. The original link is now broken, but you can access the tax return at Autism Speaks website. Finding this link made me wonder if other people wonder why I am so bitter towards Autism Speaks and maybe that this might be a good time for to tell about my life before Autism and why it frustrates me that an organization who raises so much does so little for families and kids with Autism.
In June of 1997, my husband graduated from Cleveland State. With our 2 children, Ashley and Nick, age 7 & 5, in tow we packed everything we could into our Plymouth Neon and a turtle shell thing on top of it and headed back to our home town, Carlsbad. You would seriously laugh at the things we brought with us in that tiny of a car. Our clothes, obliviously, what ever toys the kids could fit in a back pack and play with on the ride, our TV, stereo and video games all squished in the trunk. We honestly did not care if we had nothing we just wanted to go home to Carlsbad.
Unfortunately there was one Primer who was NOT so happy with leaving her friends and basically her entire 2nd grade life. The school year was tough with Ashley missing her best friend, Emily Kestner, and trying to adapt to a new way of life and new friends. So Ashley was promised she could do cheerleading through Carlsbad Pop Warner. I went in March of 1998 to sign her up; I was looking for her a scholarship. I try really hard to never promise my children anything I can’t deliver and here I was basically looking for the most favored toy at 6pm on Christmas Eve, and hoping I could deliver since I knew our budget could NOT!
Ed was working as substitute teacher in Carlsbad Unified School District, and I was subbing as anything and everything in San Deiguito Union High School District, we were trying to make ends meet and keep food on the table and gas in the car. For anyone not familiar with how substitute teachers (or any other sub position) in a school district get paid here it is. In the state of California, you get paid a month behind. Basically you work September 1st thru the 30th and then get paid on October 31st. It’s a long, long, did I say long time between pay and work.
So long story short, my stint in volunteer work began. They gave Ashley a scholarship as long as I coached 10 little 7, 8, & 9 year olds in cheerleading, something I had never done, EVER!!!! This led me to join the Carlsbad Pop Warner Board the next year and eventually co-run the Carlsbad High School Football teams snack bar for 5 years.
By now your wondering what in the world does this have to do with Autism Speaks? In reality it has EVERYTHING TO DO WITH AUTISM SPEAKS!!!
I know when you hear snack bar, you think oh like we had at Little League, candy and pop and maybe a hot dog if you were lucky, and let me tell you that perspective is completely wrong. At the high school level it’s huge! We had sales between $5000 to $10,000 a night on an average of 4 or 5 regular season games and hopefully 1 or 2 play off games with home field advantage.
To put this in to perspective, at the time I worked at the most popular breakfast place in Carlsbad, Don’s Country Kitchen. Don’s has 7 inside tables, 8 counter seats and at the time 4 outside tables. A very, very, very small restaurant! On Sunday morning between 7 am and 2 pm (7 hours) we averaged between $2000 and $3000 sales a day. Our football snack bar between the hours of 4:30 pm and 9:30 pm ( 5hours) was averaging $5000 to $10,000 a night and at that we did it on volunteers, no one was paid. Over the 5 years I did it I worked pretty much with Kelli Strawhun and Wendy Butler for hours at a time, we did all the purchasing, pretty much all the stocking and pretty much all the scheduling. Emily and Austin pretty much thought the snack bar was a second home. Kelli, Wendy, and I never took money for any of our time, none of our home copy supplies, internet usage, gas, and mileage on our car from shopping or pricing different products to get the best price or begging local stores to give us free stuff or at least discounts to cut costs. We were in it to lower costs to help kids who could not afford to play, for bigger and better football and cheer gear, and to pay the extra stipends the school district did not cover for coaches. We were in it for the kids.
So the moral of this story you ask? The moral is here is a community project I worked on, where I raised the money, I did not have a child on the football team at Carlsbad at the time, but I did it without advertisements, with out celebrities and without putting the bottom line in jeopardy. Waste not want not was our motto.
Yet here is this giant Autism organization, with a great little logo, or as I call it the evil little blue puzzle piece, raising $60 million dollars a year and I have yet to find one child this money actually helped., actually made a difference in their life. Over the life of my husband’s football coaching career, I can find many children who are now adults that the money raised at that snack bar, no matter who ran it, had their lives changed for the better because of the CHS football program. No matter where I go in my community, I hear people yell out for me or my husband and thank us for our work and ask how our kids are doing. We made a difference, my husband is still there making a difference.
Our football program now also has (off the top of my head) 3 NFL players who are giving back to the Community of Carlsbad. These are people who now make a difference because some one fundraised so they could play high school football. We also have many successful graduates in many other professions who give back to the program and many kids who go into teaching and coaching because of their love of the sport. This love came from the CHS football program that was fundraised by parents!!!
For Autism Speaks I still only see their bottom line! A Park Ave office, huge salaries, huge travel expenses and yet in my journey over the last 6 years of Autism I can’t find one family who yells from the mountain tops Autism Speaks helped me, they changed the life of my child.
So when you hear my adorable 10 year old say with a straight face, “Autism Speaks does not speak for the Primer’s, TACA does”. Please realize there is a reason, a very important reason they DO NOT SPEAK FOR US or anyone we know.
I post often on Facebook and on my blog on why I like certain Autism Charities, but the number one reason is I can find many families shouting from roof tops saying how this organization’s changed their child’s life. As for Autism Speaks and their $60 Million budget, I have yet to find one.
As always here are my favorite Charities for Autism, in no particular order, but have given me nothing physical, but have give me the ability to change my child’s life, gave my child camp, gave my child the ability to surf, lobbied for my child with Congress or just educated me along the way. I don’t need physical stuff, neither do the rest of my friends who are Autism parents, we want them, but what we need is tools, tools to make our kids lives better and for our kids to have a chance to be productive parts of society and not a burden on it. So please support the organizations that support us…
Talk About Curing Autism Now (TACA)
Surfer’s Healing
Autism Society of America, San Diego Chapter
National Autism Association's (NAA)
Autism Link
In June of 1997, my husband graduated from Cleveland State. With our 2 children, Ashley and Nick, age 7 & 5, in tow we packed everything we could into our Plymouth Neon and a turtle shell thing on top of it and headed back to our home town, Carlsbad. You would seriously laugh at the things we brought with us in that tiny of a car. Our clothes, obliviously, what ever toys the kids could fit in a back pack and play with on the ride, our TV, stereo and video games all squished in the trunk. We honestly did not care if we had nothing we just wanted to go home to Carlsbad.
Unfortunately there was one Primer who was NOT so happy with leaving her friends and basically her entire 2nd grade life. The school year was tough with Ashley missing her best friend, Emily Kestner, and trying to adapt to a new way of life and new friends. So Ashley was promised she could do cheerleading through Carlsbad Pop Warner. I went in March of 1998 to sign her up; I was looking for her a scholarship. I try really hard to never promise my children anything I can’t deliver and here I was basically looking for the most favored toy at 6pm on Christmas Eve, and hoping I could deliver since I knew our budget could NOT!
Ed was working as substitute teacher in Carlsbad Unified School District, and I was subbing as anything and everything in San Deiguito Union High School District, we were trying to make ends meet and keep food on the table and gas in the car. For anyone not familiar with how substitute teachers (or any other sub position) in a school district get paid here it is. In the state of California, you get paid a month behind. Basically you work September 1st thru the 30th and then get paid on October 31st. It’s a long, long, did I say long time between pay and work.
So long story short, my stint in volunteer work began. They gave Ashley a scholarship as long as I coached 10 little 7, 8, & 9 year olds in cheerleading, something I had never done, EVER!!!! This led me to join the Carlsbad Pop Warner Board the next year and eventually co-run the Carlsbad High School Football teams snack bar for 5 years.
By now your wondering what in the world does this have to do with Autism Speaks? In reality it has EVERYTHING TO DO WITH AUTISM SPEAKS!!!
I know when you hear snack bar, you think oh like we had at Little League, candy and pop and maybe a hot dog if you were lucky, and let me tell you that perspective is completely wrong. At the high school level it’s huge! We had sales between $5000 to $10,000 a night on an average of 4 or 5 regular season games and hopefully 1 or 2 play off games with home field advantage.
To put this in to perspective, at the time I worked at the most popular breakfast place in Carlsbad, Don’s Country Kitchen. Don’s has 7 inside tables, 8 counter seats and at the time 4 outside tables. A very, very, very small restaurant! On Sunday morning between 7 am and 2 pm (7 hours) we averaged between $2000 and $3000 sales a day. Our football snack bar between the hours of 4:30 pm and 9:30 pm ( 5hours) was averaging $5000 to $10,000 a night and at that we did it on volunteers, no one was paid. Over the 5 years I did it I worked pretty much with Kelli Strawhun and Wendy Butler for hours at a time, we did all the purchasing, pretty much all the stocking and pretty much all the scheduling. Emily and Austin pretty much thought the snack bar was a second home. Kelli, Wendy, and I never took money for any of our time, none of our home copy supplies, internet usage, gas, and mileage on our car from shopping or pricing different products to get the best price or begging local stores to give us free stuff or at least discounts to cut costs. We were in it to lower costs to help kids who could not afford to play, for bigger and better football and cheer gear, and to pay the extra stipends the school district did not cover for coaches. We were in it for the kids.
So the moral of this story you ask? The moral is here is a community project I worked on, where I raised the money, I did not have a child on the football team at Carlsbad at the time, but I did it without advertisements, with out celebrities and without putting the bottom line in jeopardy. Waste not want not was our motto.
Yet here is this giant Autism organization, with a great little logo, or as I call it the evil little blue puzzle piece, raising $60 million dollars a year and I have yet to find one child this money actually helped., actually made a difference in their life. Over the life of my husband’s football coaching career, I can find many children who are now adults that the money raised at that snack bar, no matter who ran it, had their lives changed for the better because of the CHS football program. No matter where I go in my community, I hear people yell out for me or my husband and thank us for our work and ask how our kids are doing. We made a difference, my husband is still there making a difference.
Our football program now also has (off the top of my head) 3 NFL players who are giving back to the Community of Carlsbad. These are people who now make a difference because some one fundraised so they could play high school football. We also have many successful graduates in many other professions who give back to the program and many kids who go into teaching and coaching because of their love of the sport. This love came from the CHS football program that was fundraised by parents!!!
For Autism Speaks I still only see their bottom line! A Park Ave office, huge salaries, huge travel expenses and yet in my journey over the last 6 years of Autism I can’t find one family who yells from the mountain tops Autism Speaks helped me, they changed the life of my child.
So when you hear my adorable 10 year old say with a straight face, “Autism Speaks does not speak for the Primer’s, TACA does”. Please realize there is a reason, a very important reason they DO NOT SPEAK FOR US or anyone we know.
I post often on Facebook and on my blog on why I like certain Autism Charities, but the number one reason is I can find many families shouting from roof tops saying how this organization’s changed their child’s life. As for Autism Speaks and their $60 Million budget, I have yet to find one.
As always here are my favorite Charities for Autism, in no particular order, but have given me nothing physical, but have give me the ability to change my child’s life, gave my child camp, gave my child the ability to surf, lobbied for my child with Congress or just educated me along the way. I don’t need physical stuff, neither do the rest of my friends who are Autism parents, we want them, but what we need is tools, tools to make our kids lives better and for our kids to have a chance to be productive parts of society and not a burden on it. So please support the organizations that support us…
Talk About Curing Autism Now (TACA)
Surfer’s Healing
Autism Society of America, San Diego Chapter
National Autism Association's (NAA)
Autism Link
Safe Minds
(I am sure there are other’s I missed please feel free to remind me and I will add them, also)
I will close this with the next time some one asks you for a $1 to put your name on a little blue puzzle piece, please politely decline and then write their corporate offices and tell them Austin Primer prefers Autism Charities that actually help kids!! Until next time PITAup and do something to change the life of a child with Autism, the life you change maybe your own!!!
(I am sure there are other’s I missed please feel free to remind me and I will add them, also)
I will close this with the next time some one asks you for a $1 to put your name on a little blue puzzle piece, please politely decline and then write their corporate offices and tell them Austin Primer prefers Autism Charities that actually help kids!! Until next time PITAup and do something to change the life of a child with Autism, the life you change maybe your own!!!
Awesome Shannon!!!! I'm currently writing Sprouts and Z pizza to donate their GF money elsewhere because we all know Autism Speaks does not support biomedical much less the diet. I'll forward the letters to everyone so we can send them in. It's time to cut that 60 million and put it somewhere it belongs.
ReplyDeleteShannon! You are a true hero. Thank you.
ReplyDeleteSimran, I e-mailed Sprouts in April and got no response, I hope you get a better one!
ReplyDeleteThanks Karen!
I also emailed Sprouts and did not get a response. Please forward the letters that you wrote, Simran. Maybe if we send a few in snail mail it will make a difference.
ReplyDeleteAwesome!!!!!!!!!!!!!!!!!!!
ReplyDeleteThe only place I have personally seen AS in action is at Washington State legislature fighting for insurance coverage for kids with Autism. I fully support biomed and especially changes in diet - thank you!
ReplyDelete$60 million could help so many...mimics paying taxes and not getting support? The reason I do not like Autism Speaks is (1) the organization does NOT speak for most people with autism diagnoses and (2)their horrific ad about autism stealing life. Knowing that some families struggle mightily with the presentations/behaviors of autism, I still feel as an adult with autism, who has two sons with autism, that love, not fear, is the ultimate response. AS does give grants to organizations who do direct aid, though. Aspergers' Association of New England (AANE) has received grant money from AS and this organization does a lot for families in the NE region.
ReplyDeleteThe Autism Society of America, The National Autism Committee, and the Institute on Disability (mine is at UNH, others are hosted by state universities) help directly.
Thank you. CarolAnn
Courage is an action, not an ideal.
My understanding is that many people in PA and NY were not happy with how Autism Speaks acted during insurance reform. I have asked someone who was directly involved to come address this and possibley write a blog on it.
ReplyDeleteI tried to help Austism Speaks at one point and I went looking for parents of kids on the spectrum and found none. We went to Richmond VA to get therapy for our state of VA paid for by insurance. The legislators basically said, schools want the feds to pay. The feds want the state to pay. The state wants the schools to pay. In the end, nothing happened. I agree that love not fear is the answer, but if autism speaks says they donate. They help parents LIVE with autism and not help them get better. Would you donate to an organization that treats cancer or helps you live with it?
ReplyDeleteHere is what bothers me about Autism Speaks. Their history. The Wrights, grandson improved greatly using chelation and biomedical treatment. The whole organization was created for their grandson, Christian. Their daughter, Katie Wright, tried to get them to support biomedical treatment and even she did not get her own parents to support her.
She had to move to other organizations like Safe Minds who actually does research on Mercury and she is on the board of many organizations that do biomedical treatment. She could not get help for her own child by the organization that was created for him. She found her help elsewhere.
I am also disappointed with the huge salaries that AS gives to their board members.
Go Shannon. You know I've been preaching this for years. They do NOTHING. They are a big corporate machine that exists just to pay salaries.
ReplyDelete