Wednesday, June 8, 2011

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

Wednesday, May 18, 2011

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.

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.

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.

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 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.

Saturday, January 29, 2011

To Pee or to not pee, where does the child with Autism go to the bathroom?

To my elected officials of the United States of America starting with my President, Mr. Obama, My Senators Barbara Boxer and Diane Feinstein, My House of Representative Bill Bilbray, my State Governor, my state reps, ok pretty much everyone who I vote for,

I have a question for you on what are you going to do about the relief issue of Autism.

Fine you refuse to acknowledge that there is an epidemic of children with Autism, I get that, I got that 6.75 years ago when I walked into the world of Autism and the numbers were 1:150, and that was of children 8 years and older and my child was under 3!

With every turn of budget cuts I get you do not want to deal with me or others like me, but realize I am here and I am not going away. My child is not going away, he is only going to get bigger and need more help.

Ok you don’t want to deal with if vaccines cause Autism, today, I will let that issue go and say FINE! (And yes that is the FINE in the tone you do not want to hear your spouse say it) But this issue I have WILL not go away and you will need to fix it our deal with the route of the problem.

The American’s with Disabilities Act Will need to be fixed and as soon as possible. Every new commericial building built in America needs to have a “family” bathroom. Bottom line our kids are coming in mass numbers and sorry they come with parents of 2 sexes and we need bathrooms that accommodate 0-100 year olds with disabilities. Family bathrooms in every new commercial building are a must.

Personally my child with Autism, in my mind is not fully potty trained, but he definitely does NOT like to soil himself. Anywhere he knows where the bathroom is, if given the chance to escape, he will run to the bathroom to relieve himself. Unfortunately he also loses all his clothing and shoes in the process.

Tonight that happened and he ended up in the men’s bathroom with me in chase. Fortunately my husband was within eye view and came to the rescue. For the single parent or for the parent out with the opposite sexed child this can be an extreme issue.

Had I been alone, I would have been in the Men’s bathroom STAT!!! I don’t care who was going in the urinal, I would have seen your junk. My child with Autism can’t be left alone EVER! His Autism leaves him open to eating, licking, mouthing and touching anything and everything inappropriately. This has been well documented by us and his teachers at school. It also leaves him open to inappropriate people in a bathroom. Sorry, no way in HELL my kid is going to be alone in a bathroom. I am more than fine with making you the normal male uncomfortable with me being there to protect my kid!

This is unacceptable. I know private business will object, but I am sorry they will have to change to adapt to 1:110 kids with Autism, every new business, every new buildings must have family bathrooms. We are 1:110 and we are just talking Autism, we have not even touched on any other disability.

We are here and we are NOT going away!