Thanks Autism Speaks for again doing nothing for us on World Autism Day!!!

Dear Autism Speaks,

I had decided to not write about you this year for Autism Awareness Day, until I got the following e-mail from you.

Autism SpeaksiPad2 Application


Dear Applicant,

Thank you for applying for the AutismCares iPad2 Grant.

We received 13,000 applications from around the world, but could only consider families located in the United States.

Although your family was not awarded this time, your application will be kept on file in case we are able to donate more iPads in the future.

For resources, toolkits, and much more information for you and your family, please visit autismspeaks.org

Sincerely,


Autism Speaks


Since you decided on World Autism Day to blatantly slap me across the face and point out how little you do for my family, my non verbal child with Autism and our autism community, I've decided to go ahead and write a blog and open letter to your organization.

I'm at a loss on how an organization that raised $50,238,297 dollars, almost $17 million spent in salaries, another $17 million on "other expenses" in 2010, couldn't possibly use some of that $17 million in "other expenses" for 2011 on 13,000 iPads. I was at Walmart this morning and the iPad 2 is only $399.00 and would only be $5,187,000 and would actually benefit the people you claim to be fundraising to help. As far as I can tell from your tax return is the only people you are really helping are those who are paid their salaries by you.

As for our non verbal child Austin and him getting a much needed iPad, I guess we will keep plugging along on how to fundraise a bit of the money away from you and into Austin's fundraiser.


For Austin Primer and the rest of the 1 in 88 kids with autism and their families that your NOT SPEAKING FOR, let me say thanks again for NOTHING and I hope you suck that blue light bulb and choke on the little blue puzzle piece.


Sincerely,


Shannon Primer whose proud to Speak for herself and proudly wearing black today!!!

Things every PITA should carry in their purse or backpack

PITAup.com is making a list and checking it twice for things every PITA should carry in their purse or backpack:

1. GFCFSF Snacks
2. Baby wipes
3. Pull ups
4. A Sharpie
5. Post it notes
6. Autism Speaks tax return to hand out to business that support the evil blue puzzle piece
7. Bails bond person # who is Autism friendly
8. GFCFSF restaurant list
9. Talk About Curing Autism journey guide
10. CDC website print out of what is actually on the vaccine ingredient list
11. Most wanted pictures of Paul for “Pr” Offit & Nancy “the PharmaWhore” Snyderman
12. Pure Ayre
13. Houston Enzymes
14. iTouch
15. Proloquo2Go
16. First Then
17. Headphones
18. iTouch charger for the car and wall
19. Neil Z. Miller's Vaccine Safety Manual
20. Melatonin and pear sauce for administration
21. Activated charcoal
22. Arnica
23. Earmuffs
24. Business cards with your name, number and e-mail for future PITA’s you meet
25. At least one pack of all the samples you got from the DAN conference, just incase!

OK MAYBE, JUST MAYBE we need a rolling suitcase, just saying!!!

Feel free to list anything I might have missed!!!

Thanks to my fellow PITA’s on my Facebook list that contributed to this.

So until next time PITAup, change the life of a child with Autism, the life you change, just might just be your own!!!

*Please note any links that are in green and underlined twice are being linked by the blog, and are not being linked by me and do not represent anything I am promoting.*

We live in a world in which we need to share responsibility

We live in a world in which we need to share responsibility. It's easy to say "It's not my child, not my community, not my world, not my problem." Then there are those who see the need and respond. I consider those people my heroes. — Fred Rogers

We live in a time and a age that I am sorry, you can’t turn a blind eye and say this is not your child, not your community and not your world so by default not your problem.

Autism is a huge problem. Depending on whose numbers you are going on it is either 1 child in 91 or 1 child in 110. This is a problem, for that matter no matter what the idiots at the CDC say this is an epidemic and it’s not GOING AWAY. Polio was an epidemic at 1 in 3000; again I ask the question why no one notices the difference or why no one in our government cares. I know that answer, and its Money, the money our government makes off vaccines and other big businesses, but that is not this blogs purpose.

This blog is about what are we going to do to support those parents of those 1 in 110 children and especially those parents who get 2 kids with Autism. This is not an easy life, I only started blogging on April 6, and this is the 2nd blog I have written on a parent of a child or children with Autism murdering their child with Autism.

I am honestly sorry I listened to the 911 tape, it is truly heart breaking listening to this mom say she killed her two young children and reading the news reports that say she wanted normal children. I cried, I wept, and I still feel like a piece of my heart was broken 2 days later.

As a parent of 3 “normal children” and one child with Autism, we all want NORMAL kids, WTF; we do not take wire to our children that do not fit the norm. We do not kill them.

I will say that had we continued on the path we were on when we met Autism on June 15, 2004 maybe I would have on been on this path too, but I really do not think so. At the point I was at my child slept 2 hours a day, ran full force into walls, he was like the Tasmanian devil and dumped everything out in his path, he pulled everything out of the fridge when given the opportunity, colored non stop and we bought a case of paper a month, and we have not even got to his health. He also at almost 3 years old had liquid poop, like that of a formula feed child and only ate & drank milk, cheese, wonder bread, cereal, and macaroni and cheese. He also had a distended belly and looked like he had two black eyes. He looked like death was just hovering over!

At that point in my life I do not know what I would have done if I was a single parent or a parent who did not have 2 awesome teens who stepped up and let Ed and I sleep. I like to believe I would never become that sleep deprived or insane that I would kill my child.

I think the difference between this mom and me? I found help, real help, not some organization that said and still says they speak for me but instead buys office supplies and a Park Avenue office, but an organization that really helps families newly diagnosed to Autism and what to expect and how help your child and how to learn to get help from the system to help your child.

Honestly I want every parent to find what I have! It is one of the reasons why I created this blog and our local Mom’s Night Out group. I think just realizing you are not alone is huge in our world. If you are a parent of a child with Autism and have not found yahoo groups, let me tell you are missing out on a huge resource. 6 years ago when I walked into Autism there was really no local resources, I learned everything from yahoo groups. It’s actually how I found TACA. I found some Gluten free Casein free groups and started following Dana of Dana’s View and ended up in a local yahoo group.

Without Dana’s View my life would be completely different!!! I might be the parent in the story above. But I am not and I truly hope all my friends who do not have Autism in their lives pass my story on to people who do have Autism in their lives. I want people to know there is hope, there is a better way and that they can reach out and get that help. If you are in that place in Autism where you are thinking about hurting yourself or your children, instead reach out to one of us other parents and ask for help. Or call 911 or drive directly to the hospital and ask for help. It is out there and we all want you to have it.

I am going to close this with a quote from my fellow PITA Simran Garcia, “Yes Autism is overwheming but we can do this.”

So as usual, PITAup change your life and the life of someone with Autism!

*Please note any links that are in green and underlined twice are being linked by the blog, and are not being linked by me and do not represent anything I am promoting.*

Autism Speaks and Sprouts: Are they meant for each other?

To me, the simple answer is no. Sprouts supports things like healthy living, alternative medicine, vitamins, minerals, gluten free diets and many other things. Yet for some reason they are fund raising for an organization that has some big corporate pharmaceutical, vaccine, prescription pushing companies as sponsors.

Why is this?

Well rumor has it (from the Sprouts employees who are willing to talk when PITA parents have inquired about why it is corporate fund raising for Autism Speaks) is that some one at corporate has a child with Autism.

I am hoping that this means that this high up person in Sprouts is a parent that is new to the diagnoses. Since Autism Speaks is known nation wide, they are trying to give back and do not understand what they are doing. I also hope and pray that they are in a corporation that stands for very different values than those of Autism Speaks. Autism Speaks does not speak for the Sprouts consumer and they definitely do not speak for 90% of the people I know who have children with Autism.

In my humble opinion Autism Speaks is anti anything and everything Sprouts stands for and maybe Sprouts just needs to be educated that one of their core consumer bases is not happy with their choice of charities. Since I know most of my friends who are PITA’s are doing this locally, I think maybe we need to do this nationally; politely at the corporate level. I think it is time to mount a campaign for them to stop sponsoring Autism Speaks. So please ask everyone you know who does not think “Autism Speaks” speaks for them to tell Sprouts which Autism organizations actually speak for them. It is also good to include why Autism Speaks and Sprouts policies are completely diametrically opposed. Sprouts, in my opinion, as a corporation should not support a charity like Autism Speaks that is anti homeopathic remedies, local grown produce, natural cures, alternative diets, biomedical, and supplements,

If you agree can you please contact Sprouts via there “Contact us Form” or by phone at 888-5SPROUT and tell them you read my blog at pitaup.com, as always be polite.

BUT tell Sprouts why they should speak in support for Autism Charities that support parents of children with Autism and natural, biomedical choices and not for a group like Autism Speaks.

Until next time PITAup!!!

Why does the little blue puzzle piece and its organization not speak for me?

Why does the little blue puzzle piece and its organization not speak for me?

I get asked this question A LOT!!! Well today they do not Speak for me, because they take the money out of the pockets of great charities that actually help parents. My wonderful friend, Cindy Killeen Waeltermann, today is worried about her awesome little charity not making it because of “No money. Tired of making ends meet. Autism Speaks wins”.

An example of how Cindy’s charity helped me personally is that a few months ago when a fellow San Diego PITA asked for help for a friend that went to college with her, Cindy and her charity were the first to help out. Cindy personally sent me a message on how to get the child an evaluation ASAP. This is a mom, who started a charity because she wants to get kids services and her charity reflects that. When she posts on Facebook about “events” they are doing, many of those are events are kid related, not just about raising money. When was the last time the little blue puzzle piece threw a party for the kids with Autism? When did they do a conference to educate new parents with Autism? When did they sponsor a parent of a child with Autism to go to a conference? Honestly what have they done for me lately, oh wait they have not done a damn thing for me ever!!!!

Today, my older son Nick, who turns 18 in a few days and is realizing that he will have to go to a junior college because of lack of funds asked me what Autism Charity gave scholarships to siblings of children with Autism? I laughed and challenged him to get the little blue puzzle piece to do it, so I could stop bitching about them. Well hopefully his hopes are not high because I am sure that they will fail him just like they have failed his brother and his parents for the past 6 years. Instead of helping me or anyone I know they have instead used their money for a very fancy Park Avenue office and bad mouthed the daughter of the founder for believing in biomedical help for Autism.

So if you are still wondering why you should not donate to the little blue puzzle piece and their big fat NY offices, remember that of the $60 MILLION donated last year only $837,000 were donated to expand Autism services, so do the math less then 1/60 of their revenue, $341,000 went to expanding recreational services, but that does not mean any child actually saw a recreation service it means they were expanding them.

Yet they paid $1.3 Million on advertising, their chief science officer got $669.000, yes you read that correctly they got almost as much was used to “expand Autism Services” and twice as much as was used to “expand recreational services”
There are so many more stats that I could fill up the library of congress, ok maybe that is a bit far fetched, but I could at least fill up at least the Carlsbad Library with their wasted funds.

Here is a couple of awesome youtube videos on this subject if you want more info:
http://www.youtube.com/watch?v=8fc_qtWxMes
http://www.youtube.com/watch?v=6S-9yQrsras

So PITA up and help the little charities that help real families right now.

Here are a few of our favorite ones

www.firstgiving.com/austinprimer (Talk about curing autism now)
http://www.sd-autism.org/givingPrograms.html
www.surfershealing.com
https://ssl.charityweb.net/genrescue/ (Generation rescue)
www.autismlink.com
www.nationalautismassociation.org/

”She should label that kid" and Tanya said, ”Yes like the book the Scarlet Letter or mark you with a capital I for idiot!”

Seriously, what are we getting for 60 million dollars? Does anyone know?

Because I am always being told that Autism Speaks at the very least (and I use that term loosely while my faces contorts into some gawd awful look) promotes Autism Awareness.

If we are getting Autism Awareness after all those walks and all that cash, I want to know why I’m up at 3:29 am pissed off that I again have to educate some ignorant Disneyland employee about Autism. $60 million is a lot of money, and we should have a whole hell of a lot of Awareness going on. No wonder most of us have to call it Autism Action Month, come on Autism Speaks send some money to California to educate Disneyland employees to not yell at children with Autism who are walking independently and staying with their big person, even though it was through the stroller exit and wasn't through your stupid turnstiles, the ignorant British woman who told me not to yell at the staff and “idiot” guy who wanted to put a label on my child. The worst part is I swear at least once a year I have to march into City Hall and give this lecture. When is Disney going to educate the entire staff, because I am tired of doing it myself? (OH and the quiet room will not being making me quiet, nope not this time, not ever when it comes to Autism Awareness and Action!!!)

Seriously the numbers are 1 in 91 we can’t be the first person with Autism that these 3 ignorant people have met, can we? OK maybe we can, but I am sure we will be the most memorable. Especially after I told the British lady that in this country children like mine had rights and laws to protect them while her husband sized up my husband and wondered if he could take us if he needed to. Sorry lady, I don’t care if you were a foot taller then me, my scrappy little American arse could have taken you and your husband out, and you do not mess with a mommy on mission to protect her child from ignorance!!!

Ok so here is the challenge of the day, if Autism Speaks, who doesn’t speak for the Primers and can’t make people “aware”, I guess it is up to all of us in Autism Action month to do it. So PITA Up and make the world a better place by taking some Action on Awareness today!!! (OH and Disneyland you can thank me later for not publishing your phone number at the end of this and asking my 521 Facebook friends to call you and complain too!!!)