Monday, February 7, 2011

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.


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.

Saturday, February 5, 2011

Let's stand unitied.

As a very "pro" Talk About Curing Autism/Generation Rescue parent, who does NOT HAVE A RECOVERED KID, I have kind of sat on the sidelines for this debate about recovery/cure/etc. that has been going on the last few days.

I do have an opinion on this and I think maybe the truly Asperger’s people who are having issues without causes, maybe they may be able to see things differently from my perspective as a parent of a nonverbal child, at least I hope they do.

For me, the parent of a "severe child with Autism" diet works, even if not for RECOVERY/CURE/Whatever word people hate today, DIET WORKS for “quality of life”.
Isn’t “Quality of Life” number one?

Even without recovery, I am telling you that I am not going back. I don't want that kid, and I don't think my kid wants to be that kid back. He was miserable, we were miserable. Life over all sucked!!!

Austin never had a firm stool, he slept 2 hours a night, no naps, he ran full force into walls, he had no idea what pain was. At the age of 3 he had never had a solid poop. He was in severe pain and his face looked like he was malnourished. He had sunk in eyes and looked like death warmed over.

6.5 years later I do not have that child, I also, again, do not have the recovered child.

What I have is a child who is part of my world, he SLEEPS more the 2 hours, he has firm poop, even if he does not always make it in the toilet, and he is thriving and looks like he is healthy.

For us this is HUGE!!!!

YES he has Autism, yes he has issues, and I am ok with this. His father is ok with this and I am pretty sure his siblings are ok with this. It beats the first 4 years of us life where all of our lives SUCKED!!!

What I am NOT ok with is the adults with Asperger’s or ND people of my child’s community commenting on “recovery/cure/or other words like this” if they say I am doing my child a disjustice. Honestly…

“No one would ever tell a parent of a child with Cancer to not seek recovery. How dare people think we are seeking anything different for our kids with Autism? We are not trying to change them; we are trying to heal them!” I made that statement about 4 years ago and I still stand by it today.

When Austin Primer tells me he does not want to comply with the diet we will have a different discussion.

When his team tells me my ways are not working we will also have that discussion.
So far we have done this for 6.5 years, and we have walked into every campus to a team who thought we were wrong and that diet and enzymes DO NOT WORK.
After 2 different school districts and 4 different sets of teachers/staff who specialize in Autism and special education and three main stream teachers, we have 4 special education teams who agree Austin is a different kid on the diet, 2 mainstream teachers who did not care to try or get involved and left it up to the special education team, and one main stream teacher who agrees, let me re word 1 mainstream teacher who made the effort actually knows Austin and agrees and so we have a unified front, DIET WORKS and Austin HAS to be GFCF, even if we do not have recovery.

Bottom line, ALL the TEAM agrees that Austin is healthier, and happier GFCF.
Why do I have to fight, argue, defend or do anything else to anyone? Especially a person with Asperger’s or HFA?

I am asking you all to step back and realize we are not attacking you or asking to change you. We are just speaking for our nonverbal, pre verbal, barely verbal and not fully verbal children. We vow to you that if our children become you, we will listen to your voices and appreciate what you tell us. Until then, we must treat Autism like cancer and we must fight it, full force and seek recovery. That is what good parents do, and that is what I do and will do.

Please help us be a community together and not divided. The media likes controversy lets take that from them and protect our silent victims who only have their vocal counter parts and warrior/PITA parents to speak for them.

Tuesday, February 1, 2011

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 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.