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

Neurodiversity

Thanks to my good friend Simran Garcia for the following quote and for bringing up this topic on Facebook.

“For my dear ND friends unfriend me or keep me after I say this because it needs to be said. You are ADULTS and you can make decisions for yourself. My son is a CHILD! How I care for him is MY decision because he is a CHILD! Yes I love him the way he is but he does not deserve to live a life full of asthma, allergies and brain and gut inflammation!!”

And for those of us with non verbal children I would add I am also my child’s voice and his advocate! If you are an adult and able to chose to like being Neuro Diverse, that is fine because you are able to advocate for yourself, but my child only has his parents for this!

For those of you reading this that are not familiar with the term ND or other terms there is definitions at the end of the blog.

This is a really touchy subject in the Autism community and it’s sad that it has to be. While I understand why High Functioning Adults maybe comfortable with how they are, I don’t understand how they feel the need to speak for all people with Autism. Especially children like Austin. When we started this journey 6 years ago our only concern was making Austin healthier and happier. He was awake 22 hours a day. In those 22 hours a day he spent the entire day spin in circles, coloring on paper, or running full force into the walls. He also had chronic loose stools. He thought of his parents and siblings no different then the couch or other household furniture. He also looked sick, his eyes were sunk in, and he had horrid black circles under them and his belly was extended. (Also see my husband's comment because he listed a whole bunch more that I had forgotten)

Turn the clock ahead 6 years and we have a completely different child. Do we have a recovered child or a NT child? What we have is a child with Autism who is no longer sick, who is so much healthier then he was then. He is also part of the world he lives in. He knows who we are and it is the most awesome experience to see his face light up when he recognizes someone or something he is familiar with. He is beginning to use a communication device. I know there may come a day when he decides to be part of the ND community. Until that time that he has the ability to communicate that desire, I feel it is not the place of the ND community to speak for my child.

I’d like to live in an Autism community that gets a long, but as long as my child does not have a voice, I will be his voice, I will be his advocate and I will ask the ND crowd to stop speaking for all people with Autism. You have the right and freedom to speak for yourself, but not for Austin Primer. It is my right as a parent to get my child as healthy as possible and to give him as many skills as I can to help him be a protective part of the world as an adult. Please respect those rights of parents of children with Autism.

Until next time my friends, PITAup and make the world a better place!!

Definitions:
Neurodiversity (or ND) is an idea which asserts that atypical (neurodivergent) neurological development is a normal human difference that is to be recognized and respected as any other human variation. Differences may arise in ways of processing information, including language, sound, images, light, texture, taste, or movement. The concept of neurodiversity is embraced by some autistic individuals and people with related conditions. Some groups apply the concept of neurodiversity to conditions potentially unrelated (or non-concomitant) to autism such as bipolar disorder, ADHD, schizophrenia, developmental speech disorders, Parkinson's disease, dyslexia, and dyspraxia.

Neurotypical (or NT) is a term that was coined in the autistic community as a label for people who are not on the autism spectrum: specifically, neurotypical people have neurological development and states that are consistent with what most people would perceive as normal, particularly with respect to their ability to process linguistic information and social cues. The concept was later adopted by both the neurodiversity movement and the scientific community

Diagnosis day

What do you do on the day of your child’s diagnosis? Is it a day of reflection, a day of tears (happy or sad) or is it just another day.

When Austin was diagnosed 6 years ago today, June 15, 2004, I never cried. Not once. I cried when a co worker of Ed’s child was diagnosed a year later, because I worried what she was walking into with our district.

I have cried over success and failure of friends children, but until this year I don’t think I have actually cried for me, for the Primer’s and for our losses and gains from Autism.

Some how I think this year is different. I have been weepy for the last few weeks. Not all the tears were sad and not all were happy. I have just been a mix of emotions lately. I do fear I have gone soft. SHHHH don’t tell anyone, it’s our little secret!!!!

I have cried every time I think about our Special Ed Director, Bruce Kramer, leaving Carlsbad Unified, I cry because I know what a difference he has made for Austin, and I cry because I worry about who is coming to replace him. Will it be like it was at the beginning where I had to fight for everything or will our district bring another Autism knowledgeable person in to continue Bruce’s work?

I have cried because an awesome warrior mom, Christina Martynec, who I met at the Green Our Vaccine Rally in June of 2008 and now know personally had her child undiagnosed a few weeks ago.

I have cried over Austin leaving parrell play and actually seeking kids out to play with. He may not always succeed, but he is trying. So thankful he has kids who want to help him be successful. Not just the kids at school, but kids like Paige and Julie. Tag seems to be a universal game every child can play even the non verbal ones!!!

Some how all these tears seem different then when I cried for Ed’s co worker all those years ago. Those tears were angry tears. These tears are tears for all the emotions I have felt over the last 6 years. They represent the ups and downs I have gone through. They represent my fears of the future and how I am unsure my kid will ever be recovered. They represent my thankfulness of how far we have come. They represent the things I know that I have changed and made better for the person who walks into Autism after me. They represent the things I know I still have to fight in the future.

Today not only do I reflect on my own child’s diagnosis, I reflect on those who came before me and paved the way for me and others like me. Thank you Lisa Ackerman, thank you Becky Estepp, thank you Katie Wright, thank you Dana’s view, thank you Karen L. DeFelice, thank you Dr. Wakefield, Dr. McCandless, thank you all DAN doctors who have stepped up and thank you all who I can’t mention who made a difference the for me and many others who follow us. I hope even if I change the world I live in, that I some day have the right to stand next you all, because you all changed the world for me, Austin and the entire Primer Family. We don’t have the recovered kid, but we have a completely different kid then we had 6 years ago today.

PITAup, you may not be able to change the world, but you have the ability to change the world you live in!! If it was not for someone like you, I would have had to gone home and done what our Kaiser, go home and don’t “thrive”, neurologist said and learned to live with Autism. Instead, I am today on our 6th anniversary of our Autism diagnosis, I get to reflect on the ups and down, but I know my life is better because of parents like me.

Thank you also to all that I call PITA, without you I could not get up every day and do what I do. You give me strength and courage to continue to fight. Love you all!!!

Talk About Curing Autism Now Family Picnic

Yesterday we attended the TACA family picnic. As usual it is one of our MOST favorite days of the years. The kids had fun, the parents had fun, and over all it gets 2 thumbs up from everyone who attended with us.

I want to take a moment to thank all the volunteers and TACA office staff. You once again out did yourselves. It’s nice to be able to go to a picnic where everything is safe for Austin to eat and also delish!!!

If you were not able to attend you missed some really really really good food. I want to take a moment to also thank all the food venders and give their companies a plug. I think my most favorite food was a new item that thankfully Susan Kristie came and found me and told me I had to try. Thanks Susan!!!

That item was the NuLife foods (which all their foods are Gluten Free, Casein Free and Soy Free) Chicken Burger Patties, these are also egg free. It got two thumbs up from everyone in our party. It was so good that Austin and another child in our group chose to eat the chicken burger instead of the much preferred Fritos. That in of itself is just about amazing, but to top that my anti-chicken husband also loved it. When they had extra boxes of uncooked patties, they offered them to Picnic Guests to take home. Eddie Garcia said that he turned to look and Carissa and I were a puff of smoke!!! (Guess what hubby asked to have for dinner tonight?) I went and checked out their website and they have a lot of other great items like Chicken Pancakes that I want to now try. They also have some exciting new products coming out like Breakfast Empanada, Apple Pie Empanada, and Mashed Sweet Potatoes. Their website also offers you the ability to search by Allergen beyond GFCFSF. (Oh and the company rep I met yesterday, swears this is not even their most popular product, I guess they better send me some so I can taste test their other products, lol)

Update *7/3/10* you can get a NuLife trial pack for on $10, with special discount code Enter TRYME01 in the Promotion Code box in your cart (good for only 1 use per customer)!!! (Basically its like getting shipping for free. And for the price of shipping you can add one more item to try)

Includes:

8 chicken nuggets
2 chicken burgers
8 beefy veggy meatballs
2 slices of ultimate cheese pizza
2 pieces of French toast
4 chocolate chip cookies

Newport Rib Company was also their with splendid pulled pork and beef sandwiches. As always these were a favorite amongst the entire group. It’s hard to believe that the BBQ sauce is GFCF. The have an excellent GFCF menu offered at their local Orange County, California restaurants.

In-N-Out burger was also in the house. For those of you who do not know you can safely eat GFCF at In-N-Out if you just let the cashier know. They have a separate grill where they grill GF hamburgers and will wrap them up protein style and the fries are always safe since only fries are friend in their fryers.

La Rancherita was also at the picnic serving up the cutest little tacos. I did not personally try these after being stuffed with a chicken burger and pull pork sandwich, but many PITA families ate them and enjoyed them.

For snacks there were also plenty to choose from. An old favorite was back, Green Cupcakes. The first year they attended the picnic, about the 8th mini cupcake Austin ate, Ed turned to me and said, “Are you going to let him eat another one?” I looked at him as was like “hell yes”. We had just become egg free and here was a soft, delicious cupcake that GFCFEF. They did not fail to please again this year. I am sure Austin and our friend Julie ate at least 8 each.

Other great snacks included Lucy’s Gluten Free Cookies (made without milk, eggs, peanuts or tree nuts), Pamela's Cookies (produced to be wheat-free and gluten-free, products are produced in a facility which also makes products containing: peanuts, tree nuts, dairy, eggs and soy), EnerG Pretzels (free of gluten, wheat, dairy, casein, soy, egg, nut, low protein. May contain Sesame and Poppy seed.)& Cinnamon Crackers (free of gluten, wheat, casein, dairy, yeast, egg, soy, nut, rice, low protein). If I missed any of the other vendor please let me know because I am more then happy to give them a shout out also!!!

As always please PITAup and check out the awesome sponsors of TACA. Gluten Free Casein free has come a long way since we started June 16, 2004 and the Primer family is most appreciative of the opportunity to have a fun family day with good food, great friends and an awesome Autism Charity!!! Thanks to everyone who helped make it a perfect day!!!

Is it wrong to some days just hate your friends who do not have a child with Autism?

Is it wrong to some days just hate your friends who do not have a child with Autism? Because right now I hate you all equally, as my mom used to say about me and my siblings.

Ok not because I hate you, I hate the fact that you can worry about such trivial things like wither or not your kid is getting into the right school, or camp, summer camp, or can even go to camp or if its your vacation to some exotic place I can only dream of going!!!

Honestly, my older kids dream about not working through college, they dream of a life without $50k in student loans they dream about a day that they may not be responsible for their sibling with Autism and they wish their parents could afford to pay their college tuition or take them on a cruise or to Europe, Emily dreams about an over night camp. My husband dreams of vacations far from Carlsbad. I dream of a weekly massage and unlimited shopping trips, but hey I am easy, lol.

Unfortunately that is not our life!!

Ok maybe it’s been a bad day, a really bad day!

Just because my special ed director decided to leave our district right as I hit my period and just one week before the 6 anniversary of Austin’s diagnoses, and I have to worry about the fact that a day camp for Austin can cost $1000 to $2000 a week, and that this is really the rest of my life.

I guess I am not sure why I am surprised by my negative reaction to everything (yes that is sarcasm).

I guess today is the day that I am not little miss sunshine, lollipops and life is good.

I really try. I know how far Austin and our family has come but some days you just have to say it!!

Today sucks. Autism sucks!!!

The one person in Carlsbad Unified School District that actually had the power to make a difference has left. His supervisor ended his message to the teachers about his departure with this ominous message, “We began talking this afternoon in executive cabinet about how best to fill this incredibly important position in these tight financial times.”

I honestly wish Bruce well, but I am so sad by him leaving. It breaks my heart and makes me want to go back to the crazy parent I was 5 years ago when Bruce met me. Chances are I will, but there is a small part of me that hopes that Dr. Roach is right when he said, “He has helped us “right the ship” in services to Special Education students. We have made tremendous progress in the five years Bruce has led that division.”

I guess if nothing else Bruce gave me hope. Well here to me PITAing up and keeping the hope.