Alex, the reality of having a child with autism and the reality of having a child, with autism that has siblings.

I am a lazy blogger, I do it when it fits my schedule or truthfully my mood, generally my bad mood.

So tonight I see the following post...

"Mads: Mom. Why did Alex Spourdalakis die? 

(Cleaning kitchen, drop a bowl, stop in my tracks. Heart racing)

Me: What? 

Mads: Why did he die mom? When you had our class write letters to him in the hospital they wouldn't let us put our names on the cards. Why? 

Me: Honey, what happened to Alex is so complex. I just need you to know what is being said now, is not about Alex. Ms. Jeanna Reed and I got involved because we wanted the doctors that were caring for him to treat him for what was really making him sick. They thought his brain was broke, but his tummy was broke. Just like when we took Noah to see Dr. K and he started talking and going to the bathroom on his own. If we didn't take him to Dr. K, that would not have happened.

Mads: Why don't the doctors at the hospital Alex was at know? 

Me: Because, no one told them. They aren't allowed to see the research mom gets to see. And, if I didn't work really hard to find out what was wrong with Noah I wouldn't know either. But, I love Noah, we have help, and we are surrounded by people who love and support us who are really really smart and brave. Alex didn't have that. 

Mads: I just think it is really wrong he had to die, mom. 

Me: Me too. 

I rarely post about this. I have had to work incredibly hard to close this chapter in my life, yet the book keeps opening. I am no longer a working part of the team that will bring justice to this story. Not because I was not invited, but rather, because Noah's care requires too much for me to participate. If you are new to following me, you need to know the medical negligence that Alex endured is HAPPENING TO CHILDREN WITH AUTISM AND NEUROTYPICAL CHILDREN ACROSS THE COUNTRY. You need to know that Jill Rubolino and a handful of others will FORCE the change we need to see. With science, truth, and THE HEALTH OF OUR CHILDREN as the foundation for this profound shift in the way we view medicine. And, it will change not just medicine, but politics, parenting, and THE WORLD. If you leave this story with only the surface sentiment "I cannot believe she killed her child" then you REALLY REALLY missed the point. We all need to WAKE UP. We all need to see. What happened to Alex is a part of the systemic callousness that is pervasive in medicine right now. This child, whom I met, who pet my head...was treated like a caged animal. Like a beast. It was inhumane and unconscionable, the manner in which this boys pain was dismissed. He could not speak, so, he wasn't suffering. He was simply mental. Had they only read the science, the whole story could have ended differently. I will never ever forget, as we pleaded with his doctors, Jeanna, in her signature calm, poised and incredibly brilliant way saying, "Guys, it's all right here in front of you. This is your chance to be the heroes." There are no heroes in this story. Only Alex who made the ultimate sacrifice, for ALL OUR KIDS. 

RIP Alex. You will NEVER be forgotten.    http://www.cbsnews.com/news/film-provides-glimpse-into-life-of-autistic-teen-killed-by-his-mother/"

Today reminds me why I should do it more often.  (Hangs head in shame).

Here is the reality of what children of siblings with autism deal with day in and day out. 

I am thankful that I do not have younger children then Austin and that I never have to explain this kind of stuff. I hate that I have older children and we have to discuss this stuff. 

This is powerful and part of what families live with day in and day out. It is not just about the kid with autism but about the kids who live with the reality of autism and them having to figure out their place in the world.

It is also about the parents who are so overwhelmed and have no hope and what happens.

The reality is autism kills, and about every 2 months parents hurt, maim or kill their older children with autism.

It is not a pretty truth and it is not a right truth, it is a truth that AUTISM IS UNDER FUNDED, UNDER HELPED AND MISUNDERSTOOD.

When I ask you to donate for my 5k for Talk About Curing Autism I ask you to fund EDUCATION, I ask you to fund Hope and I ask you to fund #RealHelpNow

http://give.tacanow.org/2014/OcMarathonPrimerFamily/

Please donate and make sure that no other family has to have the talk that Lisa had with her kid and that no parent, like Lisa or me has to be involved in a situation or case like this.

Seriously, I'm in love with Jillian Michaels. Don't HATE me!!

Seriously, I'm in love with Jillian Michaels.

And before you send me hate mail and tell me she posted an anti Andy Wakefield link on her Facebook page, let me tell you unfortunately I know! And unfortunately I had already purchased the video and was over a week in to her "30 Day Shred" before I was told of her possibly being pro vaccine.

Being a poor autism mom, I had already spent the $ and was feeling the burn from the DVD. Considering the norm in my world is that there is no extra money and generally no physical burn from exercise out side of chasing the kid with autism, I decided I would continue with the 30 Days since I already had opened the DVD and could not return it.

For the any of you who do not want to give her any money I recommend seeing if you can rent it from the library or Netflix. It is less than $10 on amazon.com so she can't be making that much off it anyways!All that aside as a parent of a child with autism I know most of us are on limited time, especially if you are the parent of a child under the age of 5. You are also low on funds, because if you're on my friends with me your probably spending all your money on supplements, gfcf everything free, organic, therapy and more things than I can name. So this video is made for you! For under $14 which just is the cost of the video and two 3 pound hand weights ($34 if you buy an exercise mat) and just 20 minutes of time in 30 Days you can also be in much better shape and much healthier! I know you are also like me and know we have to live forever for our child with autism so being in the best health you can be is the most selfless thing you can do! Beyond the physical health, exercise is also an amazing mental health remedy and when you are done with the 1st 30 days and you apply yourself, I can guarantee your self esteem will be higher also.

How can I guarantee that?

After just doing Level 1 of 3, I went from:

31.2% body fat to 27.2% body fat

I lost a total of 12.6 inches, 4 in the waist and 2.5 in the hips.

I gained one pound, which is all muscle!

AND I still ate out, had ice cream and drank beer occasionally. I do eat lots of veggies, eat appropriate portion sizes and take half home when eating out, but I generally do not give up anything when I am working out, I just try to eat less!! I have found allowing my self to at least have some of my favorites leads me to never having to binge eat!

I use the bodybugg system which helps you track measurements, weight and will figure your body weight. If you are not willing or do not have the funds to invest in the system then I have a few recommendations to help you. The most important thing in any weight loss program is not knowing your weight, it is know you your measurements. When you stop losing weight and if you have not done your measurements you will get discouraged and give up. At that point in time you are gaining muscle and muscle weighs more than fat, so you will need to confirm you are losing inches to keep you on track. Start an excel file with your starting weight, and the following measurements: neck, upper arm, forearm, chest (I measure under the breasts, think bottom strap of your bra to make sure I have a consistent area to measure), waist (I measure at the belly button), hips, thigh and calf. My Fitness Pal is free website/app that can also be used to track your food consumption, weight, neck, waist and hips. I know that when I started losing weight the last thing on earth I wanted to know was my measurements, but when I hit that first plateau I was very happy to see even though I had stopped losing weight that I had lost inches.

The 20 minute video consists of 3 levels, each level consists of a warm up and cool down and 3 circuits of: 3 minutes weights/resistance training, 2 minutes cardio, and 1 minute abs.

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!!!

Fundraiser for an iPad, Case and Warranty for Austin Primer

We are fundraising for an iPad for Austin Primer. Austin is a 10 year old boy with Autism. Austin is non verbal, he has been through several talking devices. He has the most success with the iTouch and Proloquo2go. The downside to the iTouch is its size. Austin many times has to go back because it is to small and he hits the wrong PEC. An iPad would make navigating Proloquo2go easier and give Austin a better chance at success at communicating with his friends and family.

Austin would also need a case. iAdapter is getting good reviews for protection and the fact that it has built in speakers. You can also hide the home button so that you can't leave Proloquo2go which Austin often does on the iTouch. Not being able to leave the program will also help Austin be more successful.

Even with the best case we would also get a SquareTrade.com warranty to protect against damage.

Thanks for reading, hopefully donating, and passing along our link to anyone who you think could help Austin.

Bullying

I’ve been a bit of a slacker lately and not been blogging as much as I should (yeah I know that is an understatement).

Unfortunately that is life and then add life of being a parent of a child with Autism, sometimes life is just overwhelming and if your children are feed, taken care of and the house is somewhat clean then the day was successful and you have to let the other stuff go, including blogging.

Today a pair of local radio personalities inspired me to come back and blog. Their post is actually not the first time I saw it, but it was the first time I saw it from any local celebrity or radio personality, which made it stand out to me (and yes I have more than one person on my friends list that is on the radio), this was the first time I saw a radio personality take on bulling).

The post that stood out was, “Special request to all you kids returning to school in the next few days: If you see someone who is struggling to make friends, or being bullied because he/she doesn't have many friends, or because they are shy or not as pretty, or not dressed in the most "in" clothes--PLEASE step up. Say hi or at least smile at them in the hallway. You never know what that person might be facing outside of school. Your kindness might just make a BIG difference in someone's life!”
As a parent of a child who suffers from Autism, I have worked very hard in hopes that my child will not be bullied in the future, or if he is I hope that he has a bunch of mainstream kids who are there to protect him. Hopefully this will pay off, but you never know.

Of course my child is only in 3rd grade and what most would consider more impacted (we in the world of Autism prefer not to use words like high functioning or low functioning, because those are never accurate on any level. In my world high functioning is potty trained, but for some parents high functioning is verbal. After 7.5 years in this world both descriptions are not really accurate as our children may not be functioning at a real world stand point, which to me as a parent of 1 child with Autism and 3 without would be that as an adult you can maintain a job and live independently.)

It breaks my heart daily to hear my friends, who are parents of less impacted children, talk about their daily struggles at school with bulling. It happens daily. We need to change the world to fix bulling, but a lot of that comes from parents in general. We need the world of parents to stop saying my child would not do that and be parents. Tell your child what is acceptable and that bulling is never ok. We also need parents of child with Autism, no matter how they are supposedly functioning to be honest with their communities. Tell the other children what is going on with your child and why they act different. In my experience when you do this, most children and their parents step up and will do what is best for your child who is different, think peer pressure, use peer pressure for good. When parents and children think a child is different and do not know how to explain why a child acts, different or weird, that is when the child gets alienated. We can change that.

The theory of it takes a village to raise a child is so true, and as our numbers of children with Autism rise it will take a village of other children who know and understand our children with Autism to grow up and understand our kids. I hope that as my 3 children without Autism and all the friends my child with Autism meets encourages other children to be accepting of all kids, and discourage bulling and encourages tolerance.

All it takes is one person or one radio personality or station to help with the cause. Thank you KSON and John and Tammy for stepping up. Here’s to me hoping you continue this outreach and helping our kids who are bullied and especially those with Autism.

Until next time PITAup and do something to change the life of a child with Autism, the life you change maybe your own!!!

Nature's Warning signs say you should remember "Special needs kids are not contagious"

The picture with this blog is Austin and Malcolm after their mainstream end of the year play. Malcolm is directing Austin to look at Malcolm's dad so they can have their picture taken. We rarely catch a picture of Austin with a smile on his face even though we see it regularly. This picture leads into this blog and my thoughts and feelings with it.

On 6/5/11 I read a heart wrenching article on a parent telling a parent like me, how they had "pity for me" but how a child like mine did not belong in the mainstream classroom. This article touched me so much that I started writing a "thank you letter" to my child, Austin Primer's, mainstream friend's parents. It concluded with Ed reading the article and editing "our" letter.

Ed at first did not really want to edit the letter, it was the end of the day and he was like "please can I do it tomorrow?"

Then he read the same article, “Special needs kids are not contagious” by Jo Ashline and he responded, "why do we never meet "these" types of parents? Haven't they seen the poster?"

Ed has a long running joke that there needs to be a t-shirt or poster that says “Natures warning signs”, and the poster will show pictures of a Rattlesnake, a Cobra, a Puffer fish and Shannon Primer.

After reading Jo's article he was happy to help me for once not be one of "Nature's Warning signs" and to write a letter from our heart to the children and parents of Ms. Coulter's 2nd grade class at Hope Elementary School in Carlsbad, CA. Here is our letter...

6/9/2011

Dear Ms. Coulter and the Parents and Children of her classroom,

As parents of a child with Autism, we are very blessed to live in a district that feels a child like mine, Austin Primer, is important. Evidence of this is in his being mainstreamed and being an important part of his community. Not every parent of a child with Autism, especially a non-verbal child with autism, gets to experience this.

Recently we read an article from The Orange County Register that reminded us how not every child like Austin is lucky enough to have classmates that realize that children with disabilities are important members of society or classmates’ parents that realize what affect that their child and they have on the special needs community. Parents and peers make a huge difference! Austin is fortunate to grow up in as an accepting community as ours (please see attached article).

We want to thank you for making that difference and for allowing your child to be an important part of our child’s learning environment. We cannot express to you how much this year has been an amazing experience and what an affect it has had on Austin, and in turn on every special needs child at Hope Elementary. From the bottom of our hearts, you and your children amaze us and here is why…

Our child with autism has worked on become a member of your child’s community over the past three years. This year it really struck us how amazing our mainstream children in this classroom are and how they have come to accept, appreciate, care and look out for our child who has “different needs and abilities”. Every time one of your children comes up to Austin and says “hello” at school or in the community, Austin’s face lights up. It reminds me why we continually work with CUSD and their amazing staff to push Austin and our Hope community for more. It amazes us how “our kids” never let us down.

It truly makes our hearts proud daily that; instead of me saying “my kid” (i.e. special needs kid) or your kid (mainstream kid), we can and do say “our kids”. We know that “our community” and “our school” are making this possible. Our District and our community will be better because of it and without each of your children and your support this would never be possible. After reading the attached article, it allowed us to have a clearer understanding of how different Austin’s program is and how different it is for most of his peers with Autism.

For all those who have invited us to a birthday party this year, thank you! We apologize that we did not attend. This year we have worked very hard on “mine and yours” goals and taking turns at home and school. Austin is just about at the point where he can do these things in social settings like a birthday party. Our goal is for Austin to attend these parties as invited during the next school year.

We hope that this letter truly expresses to you how much our family appreciates your families and how thankful we are for being part of the awesome supportive community that Ms. Coulter, her students, her student’s parents, Mr. Tubbs and the Carlsbad Unified School District are cultivating. We know not every family of a child with Autism is as fortunate as we. Also, we know Austin is truly blessed because he has been a part of Ms. Coulter’s class and that Austin was able to have your child as a classmate. Thank you for encouraging your child to look beyond Austin’s differences and for being part of an amazing mainstream team that has never said Austin did not “belong” in “their” classroom. You all have made this year the year that Austin is truly a part of a classroom and part of his community. Without you and Ms. Coulter, Austin would not be thriving. Every day you bless us by sharing your child with ours and you give Austin a better opportunity to be a future productive part of society. Your children who are our future politicians, future business owners, futures tax payers and future voters are already making a difference. They are already making our community well-rounded and as a result, will continue to grow into well-rounded adults who are concerned about and value people with disabilities.

Thanks to you and your children, the life of Austin Primer and his peers with autism looks a whole lot brighter. Thank you for helping Austin and his special needs classmates to a better tomorrow. Also, thank you for not making me the parent in the OC Register article; we are forever in your debt and we “can only hope that (we are) as contagious as humanly possible”.

Sincerely,


Shannon and Ed Primer
Austin’s Parents

iPad story on Good Morning America

http://abcnews.go.com/Technology/parent-debate-ipads-smartphones-teach-toddlers-read/story?id=13626381

I think there are flaws in this “news” story. The small blonde girl was NOT READING, she was matching. The story asks if these apps teach kids to read. NO THAT app teaches letters and matching, a clearly appropriate skill for her age group.

Also the difference between this and TV is TV is passive, this is not.
Now I am not saying this should be a babysitter any more than TV should but it can be a useful learning tool when used appropriately.

Also I encounter this all the time with parents about how their child will not give something up or stop doing something. As a parent to 4 children, age 21, 19, 11, and a child with Autism age 9. Just say no. You are the parent, BE THE PARENT!! (but I regress and this is another blog)

As the parent of a child with Autism GMA should do a story on how iPad's, iTouches and apps are changing our children's world. There is an awesome mom, in San Diego, Janine Boleda of Good Karma Apps who is changing the world of children with Autism with her inexpensive apps. many companies are making apps and charging parents an arm and a leg for them, but not Janine. She is doing it for quality of life for our kids not to make a profit. Every $ she makes goes back into the next app she creates and not her pocket!!!

GMA should do a story on Janine and no I am not her, just a huge fan!!!!

If you agree, please go comment on GMA’s story.

United we stand, divided OUR CHILDREN FALL

I left high school a long time ago, and all the pettiness that comes with being in High School, and then I met SoapNet boards which had the board wars of all board wars. I fought on those, I have at least 3 Facebook Friends who can attest to this, I had many screen names, I was good at it, I could win arguments and argue story lines, and I could fight the best of them.

Then I met Autism, and the adorable blonde boy in the picture, who was nothing like that 6.5 years ago and I realized there was actually something worthy of fighting for, something worthy of my time and my efforts and my passion.

For all of you who are invested in this Facebook war of Diet vs. non diet parents, Nuero-Diverse vs. Anti-vaccine war, I am here to tell you, the war is not worth it.

Honestly I only expect to appeal to the parents like me who are parents of kids with Autism, we may be a parent who never tried diet, we maybe a parent who is unsure about vaccines but thinks the government is trying to protect us. We also may be Pro Safe Vaccines, Pro Diet, and Pro helping their kid with Autism, because honestly most parents I am friends with are somewhere in the middle. Also most of the adults with Autism or Asperger’s I am friends with feel the same. They are not anti me helping my kid; they are anti-anyone changing them. I am not pro changing my kid; I am pro making my kid a healthy happy part of society who is not dependent on society.

Honestly, I think the ND’s are out to just divide us, which is why I am pleading to you all who are like me to think about what you are doing, what you are giving the media and what it really costs our kids. Let’s stop fighting those ND, big pharm people who are paid to annoy and distract us, and let’s concentrate on who we need to educate. 1) Our elected officials 2) the media 3) other parents of children with Autism and most important pregnant and new parents.

LET'S STOP BEING DIVIDED!!!!

I am too old, at 39.5, and to invested in my kid with Autism, and helping new parents like me, to be at war with anyone on Facebook. At the DAN in October a bunch of PITAs tried to tease me into fighting with the Autism Speaks volunteer and I said it then and I will say it now; I don't fight volunteers or the rank and file employees. If someone wants to buy me a ticket to argue with Autism Speaks at their fancy Park Ave office or this Zoey person face to face, I will do it, but until then, I have a real life, real families to help and children and a husband to attend to.

To show I walk this line day to day I have a friend from high School on my friends list on Facebook whose husband is an infectious disease doctor and even she has not unfriended me, but I am sure she has hid my posts.

So let’s all go back to what we do best…

1) Educate others
2) Educate our elected officials
3) Educate our news organizations
4) And ignore the ND and people who make us fight between ourselves when there is a real battle to fight.

We have 2 choices stand united together, or stand divided and let OUR CHILDREN FALL.

After 6.5 years in the world of Autism, I just recently started watching Soap Opera's again, I have no desire to go back to the Soap Boards, I have no interest in a board war, there or here in real life.

I'm asking you my counter part in the WAR AGAINST AUTISM to do the same, lets stand together, lets stop let this be a battle of our community, lets stand together because divided OUR CHILDREN FALL!!!

Protect our children, protect my child! Stand together and PITAup! The life you change may not be your own it may be the life of a child or adult with Autism.

Posted on a friends Facebook wall…

Posted on a friends Facebook wall…

• “Kids with special needs aren't sick or gross. They only want what everyone else wants, to be accepted. Can I make a request? Is anyone willing to post this and leave it on your status for at least 1 hour? It is special education week, and in honor of all children made in a unique way. You never understand a situation until you are faced with it.”

I struggle with these when they come up. I honestly do feel my child with Autism is physically sick which causes his autism, and I understand the underlying message is to get our kids accepted. Unfortunately I think sometimes these messages send a silent message that those of us trying to make our kids healthier or look for recovery or a taboo "cure" are not “accepting” of our kids being themselves and being accepted in the real life community. I think that is a huge misconception. I don’t think that is true for Austin Primer.

I am looking for recovery and I am looking for acceptance in Austin’s social community, which today is his elementary school. I think our teacher Liz O. and her wonderful support staff would agree, Austin has at least 60 peers who know him and understand that he has Autism after almost 3 years of partial mainstreaming. As he continues through Elementary school there should be at least 120 students who have come in direct contact with Austin and will know how to deal with Austin in social situations outside of school, such as football. A great example of this is a girl named Dallas. Dallas attends lot of high school football games (my husband is a HS teacher and football coach) in our town and is also in Austin’s 2nd grade mainstream class. Austin has attended HS football games since his 9-1-2001 birth.

Unfortunately this is a good thing and a bad thing for Austin and may be a different blog, but back to this blog and ACCEPTANCE…

This year everything changed at football. All the games that Dallas is at she runs up and talks to Austin. The absolute joy on his face, the fact that he waves (says hi) without prompting to Dallas shows he gets it, she gets it, and bottom line he ACCEPTED. I can tell other stories of these types of things in public due to being with these two awesome teachers, the Special Ed teacher, Liz O. and the awesome mainstream teacher, Caitlyn C.

My child is not the child he was 6.5 years ago, he is far from the recovered child!!!

He is still the “pre” verbal (yes otherwise known as NON VERBAL, but I have decided to take, author Kim Stagliano’s way of thinking, that we are homo sapians and we have the ability to speak, so I have a child with Autism who is “preverbal. Even though he is “preverbal, Austin is now part of MY/YOUR world and no longer only in the “world of Autism”.

The short story of change for my child is that before TACAnow.org and all they have taught me to help his health, is that he used to think of people as the same furniture, we meant nothing to him. He spinned, ran into walls, colored and ignored us the 22 hours of the day he was awake. His one and only Neurologist told us to “go home and learn to live with it, this was the rest of our lives”, oh did I say we had poop smears on the wall at this point in his life?

I’ll say it once, I will say it a million times, that is NOT my life! I refused to accept it then and I refuse to accept it now. Again, I DO NOT HAVE A RECOVERED, CURED, NORMAL, WHAT EVER WORD SOMEONE IN THE PRESS OR THE AUTISM COMMUNITY AGREES WITH.

What I have…

Is a different child and I am ok with having a different child.

Within a year of starting the GFCF diet and enzymes all of those things STOPPED! He slept through the night, he began to realize we were people, he stopped coloring, etc. Today 6.5 years ago he recognizes people; it is the most awesome feeling to get eye contact and a huge smile when I pick up from school.

WHAT I AM NOT OK with is sitting back and accepting “this” life for me, for Austin or for his siblings. I loathe parents who think that this is the lot they are given and they accept what is. Even if diet does not work or you’re not willing to try it, you better be willing to step out of your comfort zone and get your child the services they need. With 1:110 children with Autism you should not assume gets your child acceptance and you should not assume the Facebook wish is either. The way you get your child acceptance is working on all the things I and other parents work on. You work on making your child health, you work on their social community and you work on you and supporting you with a community like you.

PYNK

Oh my goodness, I am in love with Kodak’s new PYNK product!!!

PYNK is inexpensive and easy to make. Never again will I have to cut, paste, tape, or manipulate photos into a Multi-Pic Frame. From a Kodak Kiosk “your photos are automatically cropped, sized, arranged, and printed to fit your frame…in seconds”. It is so easy you do not even have to tape the photo on the mat because Kodak made a cut in the mat so the photo page fits perfectly into it. Literally it took me more time to pick the pictures then to get them sized and cropped in the program. They were printed in less than 5 minutes. I was in and out of CVS as quick as a bunny.

The other awesome thing is they are affordable. They are 8” x 10” frames and hold (1) 6” x 8” Kodak PYNK Smart Print. The white background mat can easily be decorated and customized to make them personalized with decorations, stickers, words like “Christmas 2010”, etc. There are 8 variety of frames that hold 2, 3, 4, or 13 pictures. The frames come in black, espresso, white and grey. At retail, at a CVS store, they were each $14.99, unless you’re shopping on sale CVS is rarely the cheapest, so I am sure you can find them cheaper.

They make excellent gifts for the hard to shop for family members and are sure to become family heirlooms over the years.

So the next time you’re in need of an inexpensive, personalized gift I suggest you...

1) Pick it

2) PYNK it

3) Print it

I will say the Koday PYNK while easy to navigate, the web site areas to registering and "share" your PINK story are NOT!!! It was very slow and I felt like I was back on dial up when it was first introduced. They definitely need to redo those 2 pages and STAT!!! As a parent of a child with Autism, I am on limited time and gave up after an hour. Trust me in that is a testiment to how much I love the product that I really, really wanted to "Share" my pink story. Now I just want to throw my computer across the room. I am also annoyed that to receive coupons I had to complete this portion of the website!!!

If you are interested in trying finding PYNK near you you can do so here.

Until next time PITAup and do something to change the life of a child with Autism, the life you change maybe your own!!!

The events that change us in a Heartbeat... but last life a time...

Originally posted Wednesday, November 24, 2010

Jennifer, a fellow PITA, recently contacted me about starting the bodybugg.com system. She was exactly what we both needed. After 100 weeks on the program I have become complacent. I have slacked off. I have gone back to emotional eating. No I have not gained back the 50 pounds I lost, but I have pushed myself to gaining 5 pounds. A small part was me going back to work and not having as much time to work out, but most of it was the change in a friendship, a friendship that started right after a huge life change I talk about later in this blog and the friendship began with exercising together. I am not sure if the friendship change was due to me working, or to something I did to offend her, or was due life changes she is going through, or just one of those things that just happens and eventually you just have to learn to except it and you move on. Either way it and the lack of motivation on my part to exercise regularly and stick to the bodybugg.com plan has left a huge void in my life.

Jen wanting to get into the bodybugg.com system to lose weight and be heart healthy, and this has reminded me of the reality of things. I chose this journey of heart health and weight loss was for my children. This is the entire reason I am on this part of my life journey and ultimately reminds I am still only responsible for me and the Primer Children who are not old enough to be responsible for themselves.

That does not mean I should ignore the children who are responsible for themselves, it just means I have a different responsibility to them today.

Today for my older children it is my responsibility to counsel them to make good choices, for my smaller children it is to make the best choices for them. Sorry IDEA in this world I don’t have the option to pick “appropriate”, I am going for broke and for “BEST”.

For those of you not familiar with my story beyond being a parent, a parent of four children, one of which happens to be a child with Autism, I am also a wife of a heart patient. 2 years ago on November 8, 2008, my life changed. I like to think it happened for a reason.

November 6th and 7th, 2008 Ed Primer had the flu. No one told us that the blood pressure medication he was on was a diuretic, and that you SHOULD NEVER TAKE IT WHILE ILL, and ESPECIALLY WHILE HAVING THE FLU!!! Long story short, Ed having the flu and taking his medication while being ill, knocked out his liver and kidneys. While most people including you cringe at this part of the story, I am here to tell you I am blessed and it really was a blessing in disguise. Little did we know at that moment in time your heart has three major valves that provide your heart the majority of the blood to your body. One of those valves provides more blood then the other two valves, should that valve be blocked to far, you are dead immediately!!!

Ed’s, at 39 years old, happened to be blocked at 90%! Part of this was his bad life choices; part was because he had radiation for Hodgkin’s disease at 18 from his chin to mid sternum. The fact that he had the flu, and ended up in the ER with kidney & liver failure, put a huge MIRACLE into OUR lives. Once they regulated his kidneys and liver, his heart would not comply. It made the doctors’ look and investigate further. It made them realize there was a bigger issue. BOTTOM LINE IT SAVED HIS LIFE!!! Without the flu and November 8, 2008, I might be telling a different story.

I might be telling the story of a family with Autism, whose father passed away without Life Insurance.

Fortunately, I am NOT, NOT, NOT telling that story.

I am telling the story of hope and change. I would love to be telling you all the story of Ed’s great change, but that is:

a) Not my story to tell

b) So far not happened.

Has he changed?

Yes and NO, he actually takes the supplements I tell him, but he has not lost any weight in 2 years. He has cut down on drinking, he has completely quit smoking (WHICH IS HUGE), and eats more salads, and eats 100% more veggies. Bottom line though he has not lost one pound, for that matter he may have gained some.
To this day, this scares the hell out of me. It reminds me that I am the one who is still responsible for a 10 year old, who is insecure and has puberty to endure, she doesn’t get the luxury her 21 year sister had with puberty, because we are no longer home owners, we are no longer not the parent of a child with Autism, we are no longer in control of our future.

Today, we are renters; we are the parents of a child with Autism. We are dependent on living where we live if and only if the neighbors are happy and content with us as neighbors and do not complain to the landlord. I am also responsible for her 9 year old brother who has Autism, who did not have the luxury of his 18 year old brother, who only had 11 vaccines on an alternate schedule because his mom worked for a Chiropractor who frowned on vaccines and she was afraid to tell him she was giving them to him.

It also makes it me remember the responsibility I have to my 21 and 18 year. I have the responsibility to make sure my 21 and 18 year old, my parents or siblings are not responsible to raise Emily or Austin. That responsibility is mine and Ed’s alone. If one of us has a health issue, the other is responsible to do everything in their power to protect the rest by making smart choices and trying to be as healthy as possible. SO here I stand alone with that responsibility on my shoulders.

I am 145 pounds, and I have slipped back into my bad ways. I have gained between 5 and 10 pounds, and I need to make myself get back to my personal weight mission, my personal health mission and ideal weight of 125. I have no one but me to blame or make excuses for me. Life changes, friendships change, I need to get over it.
My ultimate responsibility are to 4 people other them me, the people I gave birth too. Their names are Ashley, Nick, Emily and Austin. I owe 3 of them the most, and while they may feel that I fight for him the most, I hope when they become parents themselves they understand that I did the best I could with the options I had, and that ultimately I have tried to make sure they are not responsible for Austin. My goal for him is the same as my goal for them. I want Austin to be a productive part of society, not dependent on his parents, his siblings or the government. Ultimately I want them to not have to responsible for Austin. Unfortunately for him to reach that goal, it already has taken most of my time and resources. They may at times feel neglected, and they are RIGHT!! I am not a perfect parent, but bottom line I hope I do them justice and that they at the end of my life they are not responsible for Austin and they feel I did my job as a parent to the best of my abilities and I did not completely screw them up.
I HOPE THEY FORGIVE ME.

I guess my thought on how I had envisioned the direction this blog to go has changed , but it was a good productive direction to go with. I am not thankful that Jenn has been ill, but I am thankful that her health crisis and need to change her own health has brought me full circle on why I needed to change 2 years and why I need to continue on the path I set for myself then. Hopefully I can encourage Jen (and anyone else wanting to join the PITA heart health team) to better healthier choices and to sticking with them.

Until then PITA and change the life of a child with Autism, the life you change might be your own.

UPDATE: March 28, 2012

I pulled this blog up to quickly tell my story to someone who commented on my exercising and decided I should update it with the changes that have happened since I first posted it.

Ed has started exercising since Feb. 2012 and has lost an amazing 30 pounds. He is also walking an average of 4 miles a day.

I continue to walk daily and have been doing a strength and core video series to tone up, which I hope to blog about soon.

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.*

More of my favorite things...

The last few years’ plastics have been in the news and there is a lot of worry about using such plastics. The two most commonly talked about plastics are PET and BPA. According Wikipedia the plastic commonly abbreviated as PET or PETE bottles are “Polyethylene terephthalate (sometimes written poly(ethylene terephthalate)), or the obsolete PETP or PET-P), is a thermoplastic polymer resin of the polyester family and is used in synthetic fibers; beverage, food and other liquid containers; thermoforming applications; and engineering resins often in combination with glass fiber.” Wikipedia says BPA is “Bisphenol A an organic compound with two phenol functional groups used to make polycarbonate plastic and epoxy resins, along with other applications.”

With all the other toxins Autism parents have to worry about, I have myself decided to take the easy approach and to just try to avoid both. Since I am a bit of a PITA about the way my water tastes I was a little concerned about going without bottled water. I personally drink at least a half-gallon of water a day and my children drink only water when at home. We rarely have soda in the house and if we do we only have Hansen’s Natural Soda. Being the poor girl that I am an expensive water filtration systems are out of our family budget and the water snob in me says no way to tap water . So how does one actually give up bottle water without buying one of those expensive water filtration systems and without drinking tap water?

For me the compromise has been Stainless Steel Water Bottles and an inexpensive water system you can buy at a store near you.

The issues I have found after trying a few different Stainless Water Bottles is that they are not all Autism friendly. Our kids spill, chew, stim, throw, lose, have sensory issues and goodness only knows what else. I also have the other three children who worry about looks and what other kids will think if they are lugging around a bottle of water not in the latest trending bottle like Fiji, Aqua Fina, Dasani, etc. My first try out was the Costco brand water bottle, they are inexpensive and easy to purchase. They are nice because they keep the lid with the bottle by a small plastic strap. The down side is the plastic strap is a much preferred chew toy to my 9 year old with Autism. The down side for me was the obnoxious sound they made every time you tried to suck water out of them. That led me to take off the top and drink out of a hole bigger than a quarter and smaller than a half dollar. It also led to me spilling on myself, especially while on the treadmill. No matter how inexpensive something is it does still have to be practical. For me practical includes autism and gym friendly.

I was very fortunate when a friend sent me her version of the Stainless Steel Water bottle to try. The Tazzini water bottle is all that their website claims. It is “convenient and healthy, designed with busy families in mind, we created the healthiest, most-convenient leak-proof stainless steel bottle you can invest in. “

The number one thing I love is the cap!!! When closed is about 2 inches tall and 2 inches wide and 1 inch think. Number one thing, it is so far been indestructible by Austin, which is no small task. I also think it’s size makes it less likely to be lost if your house is somewhat clean. Unless it gets thrown into your toy chest, teen boy’s smelly room your refuse to enter or teen daughter’s closet, you should be ok, because it is big enough to spot under the coach and on your floor. Surprisingly despite the size it is still easy to drink out of. You just flip open the lid twists the spill proof drink port and drink. I also very much like the way the area you drink out of is shaped, so far Austin has yet to figure out how to chew on it. On most kid water bottles the top is one that you pull out and is just the right size to chew until destroyed.

I personally for me also like the size of the bottle. I generally drink almost two 16 ounce water bottles in an hour trip to the gym. The Tazzini water bottle is 24.7 ounces and will stay cold until the end. The bottle is also well designed. It is a little smaller in the middle which means it is easy to grab and grip while walking 4 miles per hour on the tread mill or running 6 miles per hour on the treadmill.

Emily the 10 year old also loves the bottle. As soon as she saw it tried to steal it for hers since it has a cool peace sign design.

The Primer Family agrees with the Tazzini website, “There are so many reasons to love a Tazzini!”

Tazzinni also won best product of the year in the Inventor’s Showcase at the Moms in Business Unite conference!

This blog went a little longer than I expected so a future blog will be on the inexpensive water filtration system that you can buy at a store near you.

Until next time PITAup and do something to change the life of a child with Autism, the life you change maybe your own!!!

WOW!!! Gluten Free Casein Free has never been this good!!!

Wow! I'm speechless, well almost!

Come on this is me we are talking about;-)

Tonight’s dinner was absolutely Devine! In the Primer house we eat very little junk like foods at home and today we hit the motherlode as we indulged in Amy's Rice Macaroni with Non Diary Cheese, NuLife Foods Chicken nuggets and Chocolate Chip cookies.

Let's start with the Amy's Rice Macaroni with Non Diary Cheese (Daiya Cheese) Let's point out that many frozen foods once cooked look nothing like the picture on the box! That is not the case for this product. I followed conventional oven cooking instructions, since I prefer a good baked Mac & Cheese. After cooking and stirring it looked beautiful! I have to say it tasted even better, in my humble opinion! My two little taste testers agreed and practically licked their plates clean. I swear to you any restaurant out there could serve this and no one would ever know the difference! The funny thing is Emily who is 10 was hesitant to try it since she had already saw Austin eating it, so she was clued in that it was GFCF (and may I add soy and egg free). When I asked if she knew it was GFCF she looked at me a sarcastically said "um yeah I've been in this family awhile and Austin could eat it duh!!" (Wonder where she gets that smart arse attitude, lol). She did though eat every last bite! The only downside I see to this product is the calories and fat. The box is considered it one entree and it is 520 calories, 22g total fat (34% of your daily value if on a 2000 calorie diet), 5g saturated fat, and 740 mg of sodium (31% of your daily value). As a wife of a heart attack survivor (at 39) this is definitely a food that should be eaten in moderation. My suggestion is to halve it and serve as a side dish with a lean meat and lots of veggies, and a salad!

Next up is the NuLife foods chicken nuggets, these are GFCFSFEF. If you are looking to replace McDonald nuggets these are not the nuggets you are looking for, for that matter you are never going to find those! McDonald's food is not food! At the San Diego DAN conference in 2008 one of the doctor's hit the nail on the head and said there is no such thing as junk food, there is junk and there is food and McDonald's is just that JUNK! The number one reason these won't replace McD's is they are breaded, not battered. I tasted these at the PITA mom's night in Orange County in June and can tell I understand why Ron from NuLife Foods describes these as their most popular product! They are very kid friendly. Austin had snuck 4 of them before I even served dinner! Let's just say that is a good sign he loved them! Emily also gave them rave reviews. They are 250 calories for a serving of 4. I will say both Austin age 8.5 and Emily age 10 each ate 8, but I know my friend’s boys, age 9 and 6 normally eat 4 nuggets at dinner.

Last but certainly not least are NuLife Food's chocolate chip cookies. These are GFCFSF unfortunately not egg free. So all reviews for this product will be from the non GF members of the family, Ed, Emily and I all give them 3 thumbs up! I might have also moaned when I ate my first one, but I really like fresh baked cookies and rarely have them. My sister Tanya also tasted one; her comment not knowing I had not made these from scratch was that I used a little too much butter substitute. I am unsure if this is accurate as I was afraid to over cook them. The directions said how long to cook, but my experience with cooking cookies is Toll House and you cook until the edges are golden or 1 2 3 gluten free where they taste like toll house but if cooked until the edges are golden crumble once cooled. So I went on the cautious side and under cooked! Ed said they were as good as any gluten filled cookie on the market so this is also getting really high praises from the Primer Family! I would buy these and use them regularly if Austin was not egg free and could eat them.

Until next time PITAup and make the world a better place for 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.*

Independence Day

What is Independence Day? The birthday of America? Yes, but to most it’s an extra day off.

For many families of children with Autism it’s actually the opposite it can be the day of dependence. It is one of those days where you realize your family is different and you can’t just go to any ole BBQ and 4th of July Party. Whither it is behaviors you are worried about or special diets, in our world’s it is always something, especially when invited to a mainstream party.

Until 3 years ago this was especially hard for our family. We never really went to any BBQ or 4th of July celebrations due to Austin’s Autism. Then 3 years ago the Watson family invited us over. They did not have a child with Autism they just liked us and wanted us to join them. It was probably one of the biggest Independence Day’s for our family. And I don’t mean 4th of July celebrations, it actually made us feel independent to be able to take our kids and part of a normal celebration. It truly was one of the best gifts we have been given. It made us a little more daring and a little more willing to try out new parties and places.

The other awesome thing we got out it from year to year was to see how far Austin had come. The first year we were forever telling him to not touch other peoples food and drinks we had to keep both eyes on him at all times. As the last couple years have shown, Austin has gotten better at only touching his own food and drinks. Now it’s more of a crime of opportunity if thinks we are not watching him. This year the Watson’s will not be having their annual 4th of July party, but the Primer family will still be thinking of them and thankful for the gift they have given us. We know that for many families with Autism the day of Independence has not yet come. Especially to you new parents, who are still in the weeds (new to diagnoses up to about 3 years into Autism), keep moving forward, you too will get here someday soon. I know it is hard to see it now, but please know it gets better!!! Or maybe you get better at it. Either way it feels better!!!

As we are also thankful for this “extra day off” we also give thanks for the bigger picture of Independence. While we are all at BBQ and 4th of July parties here on American soil, there are men and women in uniform all over the world protecting that freedom. I don’t care if you agree with the war or not, I just care that our Armed Service people out there fighting know we love and appreciate their daily sacrifices. They are missing the fun of 4th of July, the BBQ, the visiting with friends and family, the beer, the soda, the potato salad, the Jell-O shots and the fireworks tonight that we all be enjoying. They are also missing their families. I also thank the family of every armed service person, because I know how much they miss them also and how much they appreciate the sacrifice, because they also sacrifice for our freedom. I especially am proud of my sister and her family on this day as my brother-in-law is one of those men and women fighting to protect us! Thank you Brian for fighting for us, thank you Tanya, Kirby and Addie for being strong and allowing the rest of us the privilege of Brian protecting us!!! We love you all and are so proud of you all!!!

Until next time PITAup and if you see someone in the Marine Corp, Army or Navy today or know a family of a military person, thank them for all they do for us!!!

*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*

What is the definition of an epidemic?

The CDC's official definition of an epidemic is: "The occurrence of more cases of disease than expected in a given area or among a specific group of people over a particular period of time."

Merriam-Webster’s definition is:
Main Entry: 1ep·i·dem·ic
Pronunciation: \ˌe-pə-ˈde-mik\
Function: adjective
Etymology: French épidémique, from Middle French, from epidemie, noun, epidemic, from Late Latin epidemia, from Greek epidēmia visit, epidemic, from epidēmos visiting, epidemic, from epi- + dēmos people
Date: 1603
1: affecting or tending to affect a disproportionately large number of individuals within a population, community, or region at the same time

So my question for you is, WHY are 910 cases of whooping cough an epidemic yet 1 in 91 kids* with “autism” is NOT considered an epidemic?

California has a population of almost 33,870,000 people making it the most populous state in the Country. If you divide that by 910 you get 1 in 37220 have whooping cough in the state of California . How is 1 in 37,220 people fit this definition, “affecting or tending to affect a disproportionately large number of individuals within a population, community, or region at the same time”, yet 1 in 91 kids with Autism is not even being looked at to even be considered an epidemic.

Honestly it’s appalling!!! It was appalling when Austin was diagnosed 6 years ago and the numbers were 1 in 150. It is still appalling!

Why is that only parents and caregivers of children with Autism are out raged while our government does nothing? I’ll tell you why. MONEY!!! Vaccines for things like Whooping Cough, the flu, Chicken Pox etc, make money, boat loads of $$$. Our government and especially the CDC and the Advisory Committee on Immunization Practices (ACIP) are filled with people who make money off vaccines.

Here is what I found by searching Google for ACIP CHAIR Dr. Carol J. Baker, M.D:

From The Texas Children’s Hospital Website:

“Dr. Baker is a pioneer in the study of human infections caused by group B Streptococcus (GBS). She was the first to purify and characterize the polysaccharide capsule of this organism and suggest its use as a vaccine to prevent perinatal infections.”

From Baylor College of Medicines website Dr. Backer’s Research Interests are:

Pediatric Infectious Diseases
Group B streptococcal infections
Maternal immunization research
Vaccine policy

What I read there is Dr. Baker is in the business of trying to research vaccines. It is very well possible that Dr. Baker will make money off her ACIP committee recommending the vaccines she researches.

I wonder if I continued down the list of ACIP how many more we would find.

The ACIP according to Search website, “consists of fifteen advisors to the Centers for Disease Control and Prevention (CDC), selected by the Secretary of the United States Department of Health and Human Services, to provide advice and guidance on the most effective means to prevent diseases through nation-wide vaccination campaigns.

The Committee develops written recommendations for routine administration of vaccines to the pediatric and adult populations, along with vaccination schedules regarding appropriate periodicity, dosage, and contraindications. ACIP statements are official federal recommendations for the use of vaccines and immune globulins in the US, and are published by the CDC. ACIP is the only entity in the federal government which makes such recommendations.”

Also according to search.com, “Most ACIP members, if not all, have ties to vaccine makers,”

So bottom line those who decide which vaccines to recommend make money off the vaccines and therefore have sold our children down the river for money.

Not sure if you want to believe search.com or my research? Great I encourage you before you vaccinate up to do the research your self and see what you find. I think it might be surprising.

So what is your definition of an epidemic?

My definition of epidemic is a money making scheme on behalf of the pharmaceutical companies of the world, with them acting as our government via the CDC and ACIP.

Want a Doctor's opinion on this? Please read Dr. Jay Gordon's opinion.

Until next time, think for yourself when you hear the media, the CDC, and the WHO throwing the word "epidemic" out there. Remember you do not need to run out and vaccinate your children or update their boosters. Be educated, do the research, do math; see if 910 cases of whooping cough really qualify as an epidemic. In my mind 1 in 91 children with Autism is the epidemic facing California and the United States, not whooping cough.

PITAup and think for yourself. It is the right thing to do!!!

*Note if you wonder why random words are linked to sites? It is because the blog picks words out to hook up to PlaySushi (they are in green and underlined twice) and if I do not like the link the blog's choice, I try to fix them all by picking an alternate link to link them to so I control what is linked, but every time I do more appear. So 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.*

Not Ready To Make Nice

The song “Not Ready To Make Nice”, by the Dixie Chicks was introduced to me at the Green Our Vaccine Campaign on June 4th, 2008. I am an avid Country listener and had never heard the song before, but that day I think it became my theme song! It expressed every emotion I had encountered since meeting Autism.

The lyrics say so much!! I know they are a political protest about W., but they so relate to the Autism fight.

“I’m not ready to make nice
I’m not ready to back down
I’m still mad as hell and
I don’t have time to go round and round and round”

These lines alone say so much, no matter where we go in this battle I don’t think I will back down. I can’t! There is this cute funny adorable child who has fought like hell for 6 years who counts on me!!! He knows I don’t have time to go round and round and round, but he knows I will!!!

“It’s too late to make it right
I probably wouldn’t if I could”

I can’t make it right; I can’t undo the damage vaccines have done to my child. All I can do now is fight for my child, and make sure no other child walks my child’s path!!

“I made my bed and I sleep like a baby
With no regrets and I don’t mind sayin’
It’s a sad sad story when a mother will teach her
Daughter that she ought to hate a perfect stranger
And how in the world can the words that I said
Send somebody so over the edge
That they’d write me a letter
Sayin’ that I better shut up and sing
Or my life will be over”

Let me tell you I do lie my head down every night and sleep like a baby, I know every night I fight for ever child I know with Autism.

The line “It’s a sad sad story when a mother will teach her
Daughter that she ought to hate a perfect stranger” so fits the situation and our life.

Honestly in May 2009 we were at Toys R Us and I asked about a blue reusable bag and they said I had to have donated to autism to get. So I started to say no thank you, because I knew the bag was for Autism Speaks and my 9 year old said really loudly, "Autism speaks does not speak for us TACA does!". I don’t think there was a prouder moment for me, so proud of Emily!! For those of you not familiar with Autism Speaks I have other blogs that “speak on this subject”.

I don’t want my other children who do not have Autism to hate but honestly the CDC, Vaccine companies and Autism Speaks make it hard. We have 1 in 91 kids with Autism and no one wants to look at any real causes or offer real help for families. When we started this journey 6 years ago it was 1 in 150, why does no one else worry about these numbers?

When polio was 1 in 3000 it was an epidemic for the love of god we are 1:91 and no one cares!!!

I am going to close this out with my favorite line of the song,
“I know you said
Can’t you just get over it
It turned my whole world around
And I kind of like it”

I don’t like how this turned my entire life around, but I will say I like how this journey made me a better person. It honestly turned my whole world around. It made me reevaluate what I was doing and why. I was always the person fighting something, but I became the person who had something to fight for. I have a love hate relation ship with Autism. I love all the great awesome things it has done for me. I love the better person I have come; I love the people I have been blessed to meet. I know I am a better person because of Autism, I am just a selfish PITA and some days wish it was not my child and wish someone else was fighting for my kid. Then again some days Autism ” turned my whole world around, And I kind of like it,” because I have found some of the best friends in life and I really and truly most days love my life Autism and all!!

No matter what life hands you PITA up and deal with it!!! Your children depend on you, especially those with Autism!!!

Not sure what song we are talking about? Here it is…

Not Ready To Make Nice