An Open  Letter to Chili's Bar and Grill Corporate!!

Hey Chili's Grill & Bar and Chili's Grill & Bar (Vista)  just wanted to let you know how much the competition TGI Fridays, the new Buffalo Wild Wings Oceanside, and a bunch of local places appreciates you taking back the National Autism Association fundraiser to prevent wandering for children with autism.  Our Friday nights (party of 4 -10) visits and 20-30 people visits (family/company in from out of town/Family Birthday parties/fundraisers) are increasing their bottom lines.

Being a parent of child with autism  who is almost 13 (and wanders), in my 10.5 years of living this world, this life, I have seen and read almost every story I see about kids with autism who wander.  I also help run a Facebook page dedicated to this subject and finding our kids safely.

According to the NAA's stats 50% OF KIDS WITH AUTISM WANDER!  In my opinion  1 to 2 of those die a month from WANDERING.  They die from drowning, they die from getting hit by a car, they die from the extreme tempatures of seasons.  

THEY DIE!! (And they say autism is not deadly, I am calling... on this)

Also if you just think it is the kid, like mine who doesn't talk and can't ask for help that wanders, YOU'D be wrong.  It is 50% of all of our kids.

Tomorrow it will be 4 months since you did the unthinkable and changed your mind.  I wonder how many children with autism have wandered and died?  I wonder how many of them could have been saved if you had kept your word?

I will always wonder!!

At least one local child in my circle of friends and my city wandered and was gone for 1.5 hours.  Thanks to the NAA wandering program and our local Take Me Home Program there were 7 Oceanside Police Officers (heroes)  at their house in minutes and they took the threat seriously.  Thankfully he lived!!!

No thanks to you!  Thanks to families of kids with Autism and families like mine who take the time to educate our local law enforcement!!!

You're upper management is the opposite of hero you are WEAK and caved when our community needed you.

Happy 4 month anniversary (tomorrow August 6, 2014) of not having my money or that of most of my community.

I pray that no one in that upper management team that made this decisions has a kid with autism or a grandkid with autism, because you all will CRACK under the pressure and our kids deserve better then YOU!!

Now all I am left with is bad memories of how much we have spent with your company over the years, YES I AM BITTER!!!  Happy to give money to companies who stand by their promises.

Honestly, in my mind, there is only one company that you out rank in diservices to families like mine and that is Autism Speaks (yeah I don't believe they are a charity, I have read their tax returns)!

PEACE Out (OFF)!  I'm still taking my business else where.

NO LOVE HERE,

Shannon Primer
Mom to Austin Primer, age 13 on September 1st, 2014, who wanders!!!

PS Autism parents are like elephants we never forget, figure out how to fix this problem with our community!!

P.S.S. Since 4/6/14 when you canceled the funraiser that was supposed to happen the NEXT DAY, our family has had 17 Friday nights and at least 5 birthdays/family gatherings.

Copyright Shannon Primer and PitaUp.com

Don't "Ass"ume!!

This Washington Post story stirs up so many emotions in me.

This is the reality of many families with non verbal, not potty trained children. I have no idea if this is abuse or just trying to maintain their safety. I tend to lean towards the later, because we live in a house with locks. Austin is never locked in a room alone, but our house even on good days is locked when we go to bed. If we feel Austin is an extreme safety risk, one of us will instead of locking him in alone, sleep in his room with him. When he was at his extreme, we locked ourselves and him in his room.

We have also over the last almost 13 years dealt with pee and poop accidents. Our carpet is never going to be as clean as I would like it to be. If we didn't rent, I would never ever have carpet for this reason.

When you read this story, know that there are two sides of every story and do not assume. Most parents do not have the resources, the options, or the help that our family has had because of having older children and amazing siblings and parents to help us. We also live in SoCal which has given us many more resources then the rest of the country has!

If I did not have Ed and the older children, Ashley and Nick, to help back at the beginning 10.5 years ago could we have been this family?

YES!!

As I sit in Austin's room right now, I still think how much cleaner it could be and how the fact that his mattress is on the floor and that could be misinterpreted.

Honestly, as a renter, a mattress on a floor leaves less damage to the carpet below, and as a parent who owns her own carpet cleaner, once less area to clean. It also leaves one less chance for Austin to fall out a window. Yes parents like me think like that. We do not put anything near a window that can be pushed out.

Autism is a very complicated thing and it is a very individual thing.

When you meet one person with autism, YOU HAVE MET ONE PERSON WITH AUTISM!

It is not one size fits all, it is not all parents are the same, its sometimes all for fighting for your kid, while trying to make sure we leave it better for the next kid/family!!

Change is Happening!

Did you know that you can change your password on your i(device) to be a word?

We did it in Austin's to make spelling his name meaningful to type. 

The 1st week he has asked for help and we had to keep reminding him to look at the keyboard. I think he's lost patience and now wants to learn because he maintained contact the entire time we just did it. 

Also wrote a goal for the new IEP for him to sign into Gen Ed (non verbal and in 5th grade and yes in Gen Ed to work on social skills), library, computer lab, etc to make wriitng his name meaningful!

He definitely does better when things are meaningful.

Austin's also learning not to set his iPad down because I turn it off, because then he has to ask on his talking device for help and practice typing his name/password. (One way to problem solve, some what amused on my part)!

Sorry little buddy, your siblings, Ashley, Nick and Emily, should have given you the memo that you have the "mean mom". Yeah daddy and Em will be doing it the same way! Emily should have given you the memo that we make "mean siblings" also!!!! OOPS!  When she was in kindergarten her siblings made her write complete sentences for the answers of word problems. Her teacher told us she was the only child she had ever had at that age to do that. This teacher was Nick and Kd's teacher for kinder also, she was not a new teacher.

Thankful for my own "mean parents" wink wink PARENT, Sandy and Woody, for teaching me how to be one! Thankful for the Del Rosario family for a magical Christmas experience with Santa that made us come up with what we thought 2 years ago might be an impossible goal at the time of typing his name! Without being blessed with William's friendship and our special needs Santa, Woody (my dad), just asking a simple question! We'd never have gotten here. That simple question lead to 10 autism mom's crying when William answered something he was not prepped for on his Proloquo2Go and Apple Device

Still think changing diet and biomedical DON'T work? Think again. This would have been impossible 10 years ago. We could not at that point even get Austin to look at us. Let alone "reference us" which he is also doing also! Thinking about #RDI or diet or seeing a MAPS doctor or getting a Talk About Curing Autism Mentor! I'm going to have to agree with #Nike and say#JustDoIt!!!!!

Not sure where to start? Just ask!

I feel like a nag, but if you are not a family like ours think about finding one of my fundraising links and help us finish our goal. Honestly we are $58 from our goal but I would love to out do our goal.

#ChangeisHappening you can help be the change.

This was a long #FUA #Facebook post (or 2)  that became a new blog!

Honestly I also need to thank all our extended family who never under minded our efforts and have fully supported us in this up hill costly battle! (Yes there are familes that under mind people like us, don't get me started on them)!!!!

Autism is not for the weak or materialistic! Still thankful to have given back our house back to the bank when I was laid off 6 years ago so we could continue every intervention we were doing and still some how cut back even more to do more. Thankful for amazing doctors' Dr. Radoff our MAPS doctor and Dr. Italiano our general practitioner, and Dr. Shores (that came before Italiano and believed I had a brain in my head and was not a crazy person, and see the change in Austin also.  Thankful for our past teachers current teacher Sara Christian, and former teachers Linda Aubrey, Liz Olsen, and Michelle Malkind who see the difference in Austin also! VERY THANKFUL FOR OUR GEN ED COMMUNITY THAT ALWAYS LOOKS OUT FOR AUSTIN WHEN I CAN'T BE THERE.  I have a whole other post on how amazing they are and especially Ranada (not sure I spelled that correctly).  

Thankful that we have given up so many luxuries most people take for granted but that for the majority of the time Austin is safe in his home.  Yes, we do still lock everything, he still could wander like #Avonte or the other numerous kids who have died in the last 10 years since Austin got diagnosed. But I am thankful he actually sleeps most night. he eats fruits and veggies (unlike many of my friends kids), he may not be recovered BUT HE WANTS TO LEARN, HE WANTS MORE, and that some parent like me came before me gave their time and effort to sit down and think how they could help me.  Me the person at that moment, they did not know, my family who meant nothing to them.  All they knew is they NEVER, EVER WANTED SOMEONE TO BE LIKE THEM. 

ALONE!!!!

When you see me post regularly on this subject I will repay the gift I have been given and until my dying day, #NoAutismParentLeftBehind!!!

PITAup, Be the parent your kid needs and #ThinkOutSideTheBox!

I promise you the journey might not just change your kid, it may change you!  #TeamAustin 

I HATE AUTISM, BUT I LOVE THIS KID,  all my kids and the journey and lessons they have each taught me!  Without them, I'd just be an empty shell.  Who knew that the once young girl who never wanted kids, and wanted to be a nurse or cowgirl (yeah that was in our local paper when I was in kindergarten)  could so fall in love with 4 amazing kids who are all doing their part to change the world.

Oh crap just realized I forgot to get Austin's night supplements, I mean "godsends" together I better head to do that  since it is after 10!  Very thankful MOST OF ALL FOR THE DOCTORS WHO PUT THEIR ASSES ON THE LINE AND ARE WILL TO ADMIT THERE IS HELP AND HOPE FOR AUTISM!  THIS IS NOT A LIFE SENTENCE!! 

There are to many to name, but Andy Wakefield tops the list, he lost everything to help my kid!!! My beautiful boy Austin is better because everyone in this blog and so many more, I can't name every one!

If I missed you I apologize and know it was just because of time and tending to my kid!!

Negative Nellie

I'm in a negative Nellie kind of mood! (If you are not an autism family, please read to the end to see my I am "thankful" part).

I hate that every other childhood disease is covered by insurance, but none of them are at the numbers of autism and 1 in 68 children, age 12 and older.

I am tired that my life revolves around timers. I hate that every 8 hours I have to give Austin medicine and supplements to keep him maintaining. I hate that families like mine have to fight for everything we need to be covered by health insurance, Regional Center, and the school district. I hate that what is covered still costs me over $400 a month out of pocket for just compounded medicines (medicines made with out food allergens) and supplements, not including allergy friendly foods that cost double if not triple what the rest of you pay. (Example you buy pretzels and can buy on sale for $2.00 a pound, I pay $6 for 1/2 pound)

I HATE THAT 18 MONTHS AGO, OUR LOCAL CHILDREN'S HOSPITAL COULD NOT DEAL WITH MY KIDS HEALTH ISSUES FOR 6 WEEKS and that every time the word autism comes up, TRY TO SAY THAT IS JUST PART OF AUTISM. (I AM CALLING BULL SHIT ON THIS ONE)

I hate that the school personnel has to be in that close of contact with my non verbal child that they have to call me on every little thing. THAT NEVER HAPPENS WITH A GENERAL ED KID!!

I hate what autism has cost my older children and their quality of life. I hate 10 years of explaining that "no we can't afford that" because of autism.

I hate having to explaining to my older son, why he should ask if he qualifies for the family medical leave act because I will need help next week at a dentist appointment for Austin. I hope we can get the baby tooth pulled with our further stressing Austin's system with having to be put him under to pull a baby tooth that has not fallen out and is blocking an adult tooth. I hate that when Austin has a normal fever of 99.5, the health tech feels the need to call me.

I hate that I have a $193.44 lab bill for me that I will have to file an appeal for, because every moment I take away for my health means I am not learning or helping another family.

I LOVE that there were parents before me that came out and spoke up to help families like mine.(Please tag any that I miss).

I am happy we have a quality of life to "MAINTAIN: and are not back 10 years ago with no sleep, not potty trained and so many other things that would freak the general public out.

I have such an easier life because of parents who decided they would not keep quiet, who decided helping other families like mine was more important then the cost to their own families!

I am asking again if you do not live my life if you could consider giving at least $5 to help families like mine, change is happening, health is happening, but it does not happen with out you and your donation. We are $260 from competing our goal. ‪#‎HelpUsBeTheChange‬.

Can't help financially? Post our link and tell how our family has directly helped your family and ask your friends and family to help us meet our goal.

‪#‎SharingIsCaring‬ ‪#‎TellOurStory‬

http://give.tacanow.org/2014/OcMarathonPrimerFamily/
‪#‎FUA‬ ‪#‎AutismActionMonth‬ ‪#‎AngerIssues‬ ‪#‎PayItForward‬

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.