Not My Friend

As I sit here reflecting on the holidays and on the people that I have met through the past seven years, especially those I have met via Facebook. I can’t help but think of something that my sister told me, and how if I hadn’t been open to meeting new people; I would have missed out on knowing some wonderful friends. Many of those Facebook friends I thought NO I could not be friends with them, for whatever reason, ND, Pro Vaccine, etc.

My sister is married to an awesome guy named Brian. Brian is a Marine so Tanya and Brian move every three or four years. The military and autism are very similar in that you never know what situation you are moving into or what types of people you will meet.

So my sister once told me that she prayed one prayer every time they moved. The prayer made complete sense and really should be everyone's prayer.

The difference between us and her?

Her moves are between physical locations.

The rest of us it may be as simple as between changes in life and changes in attitude. For me I know I have had many lives and have many to come. I know there are more than these but here are a few of my lives that stand out clearly...

1) Before children/marriage (for me these are one in the same but for most of you these will be separate)
2) After children/marriage before Autism
3) After autism (honestly when I met this one I thought I was done)
4) After heart disease
5) The more lives & attitudes I have to live in the future.

So here where you are wondering why this has anything to do with my sister and her prayers…

My sister walks into every new situation, praying for “just one friend” and fortunately or unfortunately (depending on how you look at this situation) the one new friend is not quite what she expected, she is not quite like the old friends she left at the base before; she is too loud (oh wait that might be me) or to quiet (oh wait that might be one of my friends), she is to something, you get the point…

She is just "not" what she expected and she thinks to herself, “This is NOT my friend!”

Luckily for all of us, God has a different plan for us, and he does understand what we need and when we need it. Just because this is not the friend we want or think we need, this is the friend we get.

My life parallels my sister’s.

I have to say that there has been many a time I thought the same thing as what she prayed. I just did not pray the prayer she said, but I thought those thoughts about someone, “THAT CAN NOT BE MY FRIEND”, yet as I type this I now LOVE & CHERISH this person as a friend, but at the moment I met them, I thought, “THAT IS NOT MY FRIEND”.

Fortunately for me “the heathen” and the rest of us heathens out there, I think God answers my sister’s prayer DAILY and heathens just have to be willing to listen to the answer.
Life changes and sometimes so does your friends. You may not understand it at the moment but it may be one of those ”not my friend moments”. So the next time you meet someone who you would like to write off, think for a moment, is this your “one friend” or is this your “that is not my friend”

My Christmas Prayer for all my friends and ESPECIALLY my friends who have a child with autism, live with autism themselves, live autism through another family member or friend, or through their occupation, I pray for you “just one friend!"

I also pray for you one friend who has been your friend before the entire BS and understands you and gets you before the Autism BS and still accepts you. If you only end up with these two friends, at any given point in your life then you are blessed and you will make it in my world, the parent of a child with Autism.

Too all that do not realize you were “not my friend” may you understand the worth of your friendship even if I never say it to you, because today I am blessed because I met you, knew you or once, or was friends with you.

Thank you from the bottom of my heart! I will call you friend until the day I die!!

Thank you, "Not my friend!"

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!!!

All I Can Handle, I'm no Kim Stagliano

I was a bit disappointed with Kim’s book and for all the right reasons. First and foremost DO NOT TAKE THAT THE WRONG WAY!!! Yes you should buy and yes you should read it. It’s mostly because she has written most of what would be in a “Shanmoir” which now makes writing one A LOT less appealing.

The difference between her and me, first she has 3 children who have Autism, I have one, she has girls and I have a boy. The life struggles are similar, hers many unemployment issues, mine 1 unemployment issue that the next day started my family who was already struggling with Autism to add heart disease and weight issues onto our plate.

While all through the book I thought damn, how many times have I said that? Yep I feel that way all the time, especially her feelings on people saying, “I am sorry” when you state you have a child with Autism, let alone 3.

Then I came to the chapter titled, “Mother Superior” and I thought if this damn book was not copyrighted or I was rich I would send a copy of a huge portion of this chapter, HIGHLIGHTED to the lovely folks in my local community (not Autism Community) who have told me they “support me” and what a “great job I am doing with Austin and how lucky he is to have me as a parent”, yet vote against the actual politicians who support Austin staying in his home and not being institutionalized. And by support they mean just that they pat me on the head like a small child and say good job and grace me with their “support”. And this is not a political statement because there are a small few in my community who do actually support me at high school football games and do help with Austin and disagree with me politically. Those people understand what “support” mean!!!

This chapter happens to deal with a subject I have brought up before: the parent who kills their child with Autism and possibly themselves and the press has reported on it.

I won’t read you the entire chapter or the portions you should read, I won’t screw another parent of Autism out of her due right of you buying her book to figure out what I am talking about, especially if I am talking to you. The part you should read is in this chapter, please start reading here if your are not in it to finish it. It’s pretty simple, but it says a lot.

In the hard copy start on page 171, almost half way down.

“Fark sympathy”, not Kim’s actual words, but you understand what she said.
The next 4 paragraphs say so much. Then you get to #5. It is one sentence, and I have said this same sentence more times than I can remember since getting married in 1989, and it rings true more, since I met Autism, then it did when I was a hot headed 21 year old who threw a frozen steak and my husband’s head for making a smart arse comment about my cooking.

For a practically blind man, luckily Ed Primer has some AWESOME peripheral vision and the steak lodged itself in wall and did not actually hit. I so wish in 1992 we had had cell phones with cameras or digital cameras because that is a picture I would have framed and kept forever. Luckily, Ed and I have his brother Clem, who lived with us at the time, my younger sisters, Tanya and Kendra, who visited our household often and some childhood friends, especially Shelly, who do like to keep the Primer family folklore alive and well and do tell the story OFTEN!

Here is the paragraph, I think you will understand it completely, if you know me, or Ed…

“I sure as heck don’t own a gun. Between my temper and Mark’s one of us would have ended up in a pine box”

If you buy the book or read the book, just because of my comments on this chapter make sure you finish the chapter, its less than a page from here and in the 3rd from last paragraph, I read two more sentences that I know reflects my friends, parents of a child(ren) with Autism, but gets no press. “…Alison Tepper Singer, THEN Executive Director of Autism Speaks, made a startling admission in the documentary Autism Every Day by Lauren Thierry. She confessed that she’d thought about driving off a bridge with her autistic daughter”

AND THAT IS NOT THE SHOCKING PART!!!

The shocking part is that only “A MINORITY IN THE COMMUNITY VOICED SUPPORT FOR HER HONESTLY”.

In my local community, that is the norm, it is not the MINORITY. The difference between me and Alison Tepper (other than her salary she made from Autism Speaks and the resources that salary brought her… oh wait that is a different blog and I actually have no idea what she made, I only know what recent Executive directors make from Autism Speaks tax returns and the fact the Better Business Bureau DOES NOT recommend them as a charity to donate to).

The difference between her and me?

If I ever feel the need to make that statement, I have about 50 women locally who I can call, text, email, or drive to their house and say I need a drink and a break.

Even friends who I may not be speaking with right now, I know that if I was at THAT POINT they would either take Austin or they would find someone who could and they would find me a drink and a hotel to get over IT!!!!!

Not every mom of a child with Autism has that! Even with that, I am with Kim, “Fark Sympathy” or in my world, “Fark support”.

You want to support me, volunteer to take Austin for an afternoon and be able to handle him, come hang out with us long enough that I TRUST that you know how to make sure he does not escape, does not leap into traffic in a single bound, he does not get something he can’t eat, and that he keeps his damn clothes on, doesn’t poop smear, poop on the rug, recognizes the signs that a non-verbal child with Autism needs to go to the bathroom and does not hump the couch. (Sorry, I am sure that was TMI, but that is real life, that is MY REAL LIFE!!!) Unfortunately there are very few people who support Austin and most of them have the last name Primer or were born or married into the Woodruff family or a life time friend, or met us due to Autism.

So if you ACTUALLY support me or someone like me, thank you, and buy Kim’s book. For that matter, buy a case and give it for gifts this Christmas. Sorry Kim that I needed a new washing machine at the beginning of December and just got around to purchasing the book, but I think you will understand. To the rest of you if you purchase one copy or a case, It will be the best showing of supporting me, next to actually watching my kid.

The best part of this book is I think everyone, not just families of children with Autism can get something out of it. Kim is right you will laugh and you will cry in this book, but at the end of it I think you will think to yourself, that was a great way to spend my time! For a mom who has only read 3 non medical/autism books in the last 6.5 years, that says A LOT!

And sorry my copy is not available to be loaned out, except to my closest PITA’s since I am patiently waiting for Kim to arrive in San Diego and sign it, and since there is 6 weeks between Decembers pay and the end of January’s pay for Ed I can’t afford a copy to share. IT’S MINE, MINE, MINE!! (ok I apologize for my NT girl attitude, I will try to share)

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

How many “blue ribbon” school boards would have the audacity to publicly say to parents of the students who do not have IEPs: “we only have to provide

Individuals with Disabilities Education Act is now officially 35 years old. A Special Ed Lawyer Jennifer Lavaino has a blog and asked the following question….

"Does anyone believe for one minute that school districts would get away with telling parents of children who do not have disabilities that they are striving for average? How many “blue ribbon” school boards would have the audacity to publicly say to parents of the students who do not have IEPs: “we only have to provide adequate”?"

So my first thought is maybe we have been asking for the wrong thing. The law does not does not define what the “appropriate” means in the entitlement to FAPE, but I am pretty sure that many other laws have challenged similar issues. The first that comes to mind is Brown versus the Board of Education.

“Brown v. Board of Education of Topeka, 347 U.S. 483 (1954),] was a landmark decision of the United States Supreme Court that declared state laws establishing separate public schools for black and white students unconstitutional. The decision overturned the Plessy v. Ferguson decision of 1896 which allowed state-sponsored segregation. Handed down on May 17, 1954, the Warren Court's unanimous (9–0) decision stated that "separate educational facilities are inherently unequal." As a result, de jure racial segregation was ruled a violation of the Equal Protection Clause of the Fourteenth Amendment of the United States Constitution. This ruling paved the way for integration and the civil rights movement”

Would this not lead us to argue that if your home school is a blue ribbon school then "appropriate" services for a child on an Individual Education Plan (IEP) would have to be comparable to blue ribbon special education services and NOT to the argument of ADEQUATE?
From the Indiana Department of Education web site the description of a “NCLB - Blue Ribbon School Program”:

“The No Child Left Behind—Blue Ribbon Schools Program honors public and private K-12 schools that are either academically superior in their states or that demonstrate dramatic gains in student achievement. On July 28, 2002, the US Secretary of Education announced that schools singled out for national honors will now reflect the goals of our nation's new education reforms for high standards and accountability. “

I think most people think when the parent of a child with a disability wants the “best” education that we want something different than every mainstream parent wants. I would argue that we want the same thing you want. We want to see measurable “gains in student achievement” and we would like to see “standards and accountability”. In mainstream education, parents expect “dramatic gains in student achievement” and “goals of our nation's new education reforms for high standards and accountability”. As parent of a child with a disability, why should I not expect something comparable? I live in reality; I know my child’s abilities, but it is unfair to limit my child to an “appropriate” education without some kind of way to evaluate “appropriate”. Bottom line most parents of a disable child would be happy with having a fair and accurate standard of measurable “gains in student achievement” if there was actually a measurable way to show “gains in student achievement”. Showing measurable “gain in student achievement” should not just be measured in the classroom; it should be measured in the real world. If you cannot maintain that achievement and repeat it out side of the classroom in a real world scenario, then it is not really achieved.

Maybe I have unrealistic expectation, but my goal for Austin Joseph Primer, who has Autism, is the same as for my other three children: Ashley Lynn Primer age 21, Nick Primer age 18 and Emily Diana Primer age 10. I would like Austin to not have to be dependent on the government, his parents, or his siblings as an adult for his day to day welfare. The reality of life is anyone of my children might not meet that standard. Reality dictates that anyone of my children may succombe to the harsh realities of alcohol, drugs or any number of disabling aliments; which would put them at the mercy of the state. However, although they are not there currently, there brother Austin is.

Therefore I am asking for every family like ours in our society to meet the challenges for those (like Austin) who are at that level of need currently. Schools are the vehicle for social equality. Even the disabled must have access to the level playing field. Our public school system is “the level playing field”. Every American is guaranteened the right to “Life, liberty, and the pursuit of happiness”. The parents of the “disabled” are merely asking for the access to the road to “the pursuit of happiness” for our children.

Hopefully Jennifer Lavaino’s dream of, “Here’s to hoping that 35 years from now, the dream of IDEA will met.” will come true.

I am here to tell you it can come true. We just need to make sure enough people, who do not have a child like ours, feel as passionately as we do help us.

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.*

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.

Happy Birthday Ashley Lynn Primer? or Happy Thanksgiving Grumpa?

Shannon Primer is not sure; this is a moral dilemma, but I need some objective opinions.

In past years when my sisters and I worked in the hospitality industry, our families worked Holiday meals around our work schedules. That being said, most years we were all off by at least 3 pm. Fast forward a few years, none of us work in that industry now, but the oldest grandchild of my parents now works retail and this year has to work 12 pm to 6 pm. (I should state this is my oldest child Ashley). For me, my first thought was “Let’s have thanksgiving dinner at 6:15 pm.” I heard arbitrary groans and moans from family members and think “Ok, fine. Let’s compromise and have dinner at 4 and dessert at 6:30 so Ashley does not feel left out.” My Dad then objects, and says he is eating at 1:00 or 1:30 pm even if he is eating alone (we should hold him to that. Maybe he’ll cook for himself too!). I guess he has always felt holiday dinners should be early, but at 39 years old, this is the first I have heard of it.

Ashley is a good daughter/granddaughter and does not want to cause waves. She said to have it whenever GRANDMA wants to have it, but I am personally annoyed. Not only is this Thanksgiving, but Ashley’s 21st birthday, and her birthday always falls around Thanksgiving and we generally celebrate her birthday with cheesecake on Thanksgiving, and here is my dad saying she should not have dinner with us and he will only eat at 1ish!

Part of me agrees with Ash, part of me thinks my Brother In-Law just got back from war and I should maybe comply because I am truly happy and THANKFUL he is home safe and sound. Most of me, on the other hand, wants to just say nicely to my sister and my mom that the Primer’s will be eating dinner 6:15 when all of the Primer’s can be here. Honestly, what is dinner without Ashley; what is Thanksgiving without celebrating Ashley’s birthday? We, the Primer’s, have done that for almost 21 years. I hope to continue that for 21 or more years…

At what point does one go against their own dad to do what they truly think is in the best interest of their almost 21 year old daughter’s holiday and birthday? I know Ash just wants peace and quiet and does not want “GRUMPA” or grandma upset; she also does not want me causing a family scene or her causing a family feud. But where in the world of being sibling, cousin, family member or any other related person, mean your day and your time is not important? Ashley is as important as my dad to us having a family dinner. How does one chose between their parent and their child???

For me, it’s Ashley’s 21st birthday Sunday, we always celeb rate with Cheesecake after Thanksgiving dinner and it can’t be Thanksgiving Dinner or dessert without Ashley. If it’s not Thanksgiving without Ash, then I should not celebrate without her?

Am I wrong to feel this way? Should I compromise further then saying dinner at 4 and dessert at 6:30? Should I not attend dinner at my sister’s even though I know I might offend her and her husband if I don’t? What is a girl to do? My dad already put me between him and my daughter. My daughter said chose him, but ever fiber in me says chose Ashley!!!

Please tell me what to do, here or on Facebook.

UPDATE Grumpa woke up this morning and was in a better mood, dinner is 6:15 pm. Got to love Grumpa when he is not Grumpy lol.

Communication Shut Down Day

Blog thoughts on https://communicationshutdown.org/

Things I wanted to say today November 1, 2010 on Facebook on Communication Shut Down Day, but could not because I vowed to be silent on Facebook, Twitter and MySpace.

6:30 am. Woke up, looked at phone and realized, Oh ShOOt (clean version) I can’t post on FB for the rest of the day. CRAP!!!!

7:00 am Pumpkin seeds taste best fresh out of the oven and HOT!!!

7:35 am Damn its cold, it is definitely fall.

8:20 am Crap, I can’t respond to a private message, even if it is IEP related because I took a vow to not post on FB. Do I have Kristen S's email address? Oh they should have made us shut down e-mail other than work related also. That would have made this more like Austin, and being able to observe, but not communicate.

9:00 am Damn!!! Shelly made it to work, that is impressive after drinking Dirty Shelly’s at Oktoberfest yesterday.

10:00 am realized I need to go back to the gym, STAT, I have muscles I am neglecting and riding the mechanical bull yesterday pointed them out this morning.

12:20 pm peaking at FB friend Kelli popped up in Private chat, cursed, and sent her a text message. Thought to self damn they should have made me vow to stay off FB, Twitter, and text that really would have killed me.

12:25 pm wondering if I should be annoyed that the https://communicationshutdown.org/ app posted to my page at like 7 am. Wasn’t I supposed to not post, and yet they did? I could see if they did at midnight, but 7 am? Just saying. Autism has no apps that can magically post for them.

4:38 pm Whose bright idea was it to drive to Escondido during traffic hour?

6:45 pm Thinks Emily Primer might be the smartest Primer yet, she said we should get a mechanical bull for Austin’s birthday next year, after I complained that the guy running the mechanical bull yesterday at Oktoberfest did not even challenge Austin. Damn that girl is smart, just saying!!!

7:30 pm read two Facebook friends responses on Facebook to Communication Shut Down day.

• Elizabeth M.: Not the 2nd yet, but here I am! I stayed off until about 4pm today. I am going to be perfectly honest here, while off of Facebook I did not even remotely feel silenced or socially alienated like people with Autism do. I was able to shop, talk on the phone and care for myself and children. However I am praying for hope and recovery for Autism. I hold hands with my fellow Parents whether in silence or not.
• Cindy W.: I'm actually getting a kick out of the people who said they wouldn't be on FB today who are actually lurking on FB.

My response here and not on facebook…

As a parent of the nonverbal child, I never took this day as a day I could not look or read on Social Media; I took as a day of silence. First and foremost because my child is silent does not mean he is not in his world or does not observe it. So if that means I cheated, so be it, but I made it 24 hours in support of him. If you read from their page, I took their response to mean the same thing. First and foremost, their “aim is to simply encourage a greater understanding from people outside the autism community. Social network users have become reliant and even addicted to platforms like Facebook and Twitter. And if they shut down for 1 day, they will feel a sense of disconnection and a sense of frustration.”

I am inside our community and I still took the vow.

From their site also, “When you get the CHAPP, you are making a donation and helping to raise funds and awareness for autism. If you decide to cheat a little on the day and log on to your account, that's entirely up to you”

Also from their page, “We are talking to a number of people on the spectrum and parents of children with autism who will be blogging on Nov 1 about their positive experiences and also their challenges”

I personally took Social Media to also mean no blogging, so you all will see this tomorrow, because I am also not blogging today, even though I have a lot to say.

8:00 pm Shannon Primer has to love a man who will vacuum and straighten up, upstairs when he knows his wife will deal with the social worker tomorrow alone, since he has football practice and for some reason they both never planned ahead when having a kid with Autism and made him have a birthday not during football season. Thanks Ed Primer for helping out yet again! I know I bitch and complain, but I do appreciate you!!

8:15 loves that her 18 year old is checking his General Election Guide for his first time voting tomorrow. Yeah Nick, you Rock!!! He also said he wants Ed and I to wait to vote with him. Family tradition here. So if you ask before 8 pm if I voted the answer will be no, I vote when Ed gets home after football practice and when Ash and Nick roll through the door. Screw all of you who vote by mail, the Primer’s vote in groups!!! Love VOTING DAY!!!

8:33 pm Damn another friend without a child with Autism just popped up on FB in private chat, and he is not answering my text, oh well he will forgive me. Won’t you Eddie?

8:46 pm cursing Eddie S. for not checking his DAMN iPhone! And still thinking next year they should make this day not the day before election day and for lots of communication venues like blogging, Facebook, Twitter, MySpace, texting, e-mail, etc. I am just annoyed and not really challenged like Austin.

8:49 pm Ok maybe I am really annoyed now by not being able to post on FB. My cousin’s cousin’s wife just posted on a picture of Amy’s Rice Macaroni & Cheese with Non Dairy Cheeze picture that I posted, saying that my Henry’s market is now carrying it after I asked for 6 straight weeks and had to threaten a blog. Ok it was worth the protest; they also started carrying Daiya Cheese, and Udi’s bread. Damn I forgot to mention Amy’s new GF Chocolate cake, note to self to ask for that tomorrow. Oh wait my complaint was I wanted to respond to Naomi G on how to get it at her Health Food Store.

8:51 Eddie finally noticed I texted.

8:55 Friend Kelli S. pops up to point out I am cheating by having Facebook open, told her via text I was blogging about the subject as we typed lol.

9:25 Wonders if I went to bed before 9:25 PST yesterday and it is now 9:29 PST if I can post a new blog? Ok , I am going with no since then I will want to post it to Facebook and I am sure that is against my vow. Damn ethics. WTH is up with those?

9:32 Autism Warrior friend Laureen F. Pops up to comment I vowed to be off, sent her back via text I vowed to not communicate. Waiting for her response;-)

9:34 Noticed Trudy S. posted on Facebook and cursed her for being in Ohio, I am sure she will understand.

9:50 pm bummed Ash called to say she has class and that she will have to vote by herself!!! We will miss her.

9:53 pm Loves Jackie S.’s FB post that says, “I wasn't off fb today to be silent about autism. I was off fb to show support for children and adults with autism, to raise money for GOOD organizations, and to at least attempt to get a glimpse into what it feels like to not talk and/or communicate, even with those I care most about (cuz lets face it...even those who are verbal have a hard time communicating).”

10:00 pm I broke and responded to a FB post even if was only privately. GRRRRRR, sorry, I can’t not respond to a family in need. Austin will understand, I hope.

10:05 pm wonders what a “Hot Luncheon Sundae” is? Farrell’s Ice Cream Parlor is offering one free if you come in with a “I voted sticker”. I like free!! I like Farrell’s and really really want to visit the one in Mission Veijo. Do you think they offer anything GFCF for Austin, or do I need to run away from home?

10:09 pm giggles at Amy M’s post that good friends help you clean your garage and thinks great friends “watch Christopher”!

10:25 pm I think I am ready for bed, but am really really trying to make it to midnight to post this blog, I am wondering if I can make it???

10:28 pm Loves her friend Lisa R.’s post “Hubby and I spent 1/2 our date researching the props for tomorrow's vote. I think we are voting the same way on all but 2 items - when we first got married we canceled each other out 100% on every item... time and proximity can change a lot it seems!”

I think Ed and I are only voting differently on one, but I failed to ask him how he is voting on Prop 19 and I am unsure myself how I am voting, so it may be 2.

10:36 pm I am glad I broke my vow of silence and responded to a PM that needed help. I know that Austin will understand that kids like him need help even if we vow to be silent.

10:38 pm Random thought, I love that Sunny Garcia has not unfriended me and all my politically unfriendly Autism thoughts, and that he really is in it for the kids, thanks to Surfer’s Healing!! I <3 Sunny!!!

10:43pm trying to make it until 11, then I can at least lie to myself and pretend I made it 23 hours.

10:53 pm Knows it is time to go to bed when she hates the friends from high school that have the means and ability to go to the World Series. I am not jealous, I am not jealous, if I keep chanting this will be true, especially since how would you all know I spent every summer in San Jose with the most awesome SF Giants fans ever and that I am a huge fan and you should have taken me the parent of a kid with Autism? Even if you met W. and I am anti, lol. Just saying!!

11:31 PM Loves that Nick Primer just came down to discuss with me why I am voting for every state or City Prop and why after he already asked his dad and we know that there is at least one, Ed I might have different opinions on some issues!

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.*

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!!!

My Sister's Keeper

My Sister’s Keeper in my humble opinion was an amazing movie. It was also a very emotional movie. We have another family in our community that had a child, a daughter, die from leukemia few years back. Watching this movie brought back all the emotions of watching from the outside as Michelle died. It also brought to the surface all the emotions of having a child who will have a life long disability. Honestly how do you decide who has the better life? Part of me wishes Austin had 15 years of normal, hell I would give almost anything for any part of normal. I would give up all the poop smears, the pain he didn’t feel, but still went through, the not knowing us, not understanding, the entire process of getting here to experience one day of normal, one day of Austin being a typical 9 year old. Then I have the other part of me that feels selfish. How dare I want that when there are so many parents who just wish their child was alive.

Who is right in this? Honestly no one, how can you be? It is a no win situation, all the emotions are valid and none are better or worse then the others. We are all mothers, all parents of children who need help, we are all parents fighting for our kids but what really defines who has more pain? I honestly do not know. It is like the old saying “It is better to love and lost then to never loved at all”, right? Well that would imply that the parent of the child who died was better off, but is that right? Is that correct? I will probably never know the answer and will probably always wonder.

The thing I learned from the movie My Sister’s Keeper, is the thing I already knew. A mother will do anything for her child, she will fight forever for her kid and hell has no fury like a mother scorned. I did also learn that maybe we need to listen to our children, maybe ask what they want from this life. This also leads to huge issues for me like it did for the family in the movie. No one actually asked the child who was sick what they wanted and no one asked the child who was expected to help the child who was sick.

(SPOILER BELOW: if you are going to watch the movie abort now, STOP READING NOW!!!)



I was surprised that the daughter was doing what the sick daughter wanted. I honestly thought she was doing it to just make her parents ask her, her opinion. Of course, I might project my feeling of what I think my 10, 18, and 20 year old think on to things. I am not sure they always tell me all they think on the subject. Hopefully after reading this they are a little more open to discussing it, and hopefully by watching this movie I am a little more opening to listening and hearing what they have to say.

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

Favorite New Products

If you have kids with or without Autism or pets, there are a couple of products you need immediately. The first is the Shark Steam Pocket Mop and the Shark Portable Steamer. It’s amazing what these two products can do with just a little elbow grease and no harsh chemicals. I’ve had the Shark Steam Pocket Mop for a while, but just never got around to using it regularly. The other day my sister and I cleaned my terrible tile floor by hand. I have since been steam cleaning it daily to keep it clean.

I then decided to borrow my sisters Shark Portable Steamer, and I love this one even more. It’s amazing what it can do with its triangle shaped head. Stainless steel appliances, no longer have streaks that other cleaning products left it with. The grease from my stove gone. Little hand prints or the dirt they leave on doors and paint gone! Granite counter tops clean. It is also easy to use around the edges of the toilet. It’s amazing. I want one of my own immediately. I am so in love I think I might have to invest and upgrade to their newest model the Shark Vac-then-steam model and the newest portable model and the new portable model.
This product also kills 99.9% of germs leaving them virtually dry within seconds. No need to worry about around germs, kill them on contact with the steam and no chemicals.

Amazing, I tell you!!!

The second product is Pure Ayre odor eliminator for all dogs (and people). It’s amazing and its food-grade and 100% biodegradable, so it is safe for people and pets. I have allergies to everything and this did not cause me any problems, and it smells great. The company even claim it can take care of skunk smell. If that is the case that is even more amazing.

Pure Ayre also works well with the steamers. I pour a ¼ of a cup in with the water and then steam clean the bathroom floors and no more urine smell. When you have 2 men and one small boy in the house the floors in the bathrooms need cleaned a lot. This is one thing that definitely will help keep your bathroom clean and fresh. You can also use it on furniture and carpet. If you own a carpet cleaner you can add it to the cleaning solution and use it with that also.

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

10 Things Parents of Children With Autism Wish the Hotel/Travel Industry Knew

As summer wraps up and the numbers of children with Autism grow, the amount of people who travel with children with autism increases. To address this issue, I have provided the following ideas that parents of children with Autism wish the hotel/travel industry knew.

1) Put some of the rooms with 2 beds on the outside edge of the hotel. This enables families to lower the risk of disturbing other guests.

2) Add a second lock to the door, as high as possible. Many of our children are unbelievably creative when it comes to escaping.

3) Add a lock, as high as possible on the outside of bathroom door. Our children are a huge risk when it comes to danger, including drowning. They also may not feel pain and could turn on the shower at an unsafe temperature. My child also loves to dump anything out that is in a bottle. When he was little he was also notorious for flushing anything and everything he could find. Adding that extra lock may cost you a few dollars, but in the long run it will save you a ton.

4) Securely attach all pictures, mirrors, and decorations to the wall. Even here in Southern California the home of the earthquake, it never ceases to amaze me how many hotels, restaurants and dressing rooms do not secure their mirrors. Our children sometimes are like mini earthquakes. Please help protect your investments and our pride and joys.

5) Offer more than one kid friendly channel in your selection. There is nothing more annoying then only having one kid channel even if your child does not have Autism. The Cartoon Network does not count as child friendly after 4 pm.

6) Provide Autism and disability training for your staff. Have a place that a disability can be noted in your hotel/airline computer. Especially in case one of our escape artists makes it out, your staff will know what may happen and which room to contact immediately. Also, have your computer software have the ability to input our cell phone number in case our children escape when we are not in the room or at the airport.

7) Have a very strict policy about not allowing the pool door to be propped open. Children with Autism have a huge risk of drowning as many are highly attracted to water.

8) Offer access to portable refrigerators and microwaves even if it is at a small service charge.

9) Have a list of local restaurants that offer allergy friendly food choices. If you have a restaurant or room service insure that they serve chicken breasts, 100%beef hamburger patties, and French fries that are gluten (wheat, rye, oats and barley) and casein (milk) free. Offer steamed veggies that have nothing on them. 1 in 150 people have celiac disease and have to be gluten free; there are many additional people who have milk allergies. Making these small changes will help millions of people not just those with Autism.

10) To airports and other places that have security check points, please have a guest assistance area that we can through security without the huge lines if we tell you we have a child with Autism. This will make body scanning the child with Autism easier and quicker. Our children often do not do well with lines, strangers, noise, people touching them, taking on and off their shoes. If a family gets chosen for a secondary check, have someone available to help families during this time.

If you the readers have other ideas, please let me know and I will add them to the list.

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

Next Blog topic: New favorite products.

Back to School Night 2010

Wow, what a years’ time and a completely different mainstream teacher can make in a “Back to School Night” experience.

To protect the not so innocent, I am going to just call last year’s mainstream teacher Miss O., don’t let the “Miss” fool you she is far from young and needs to retire, IMHO. I am also going to protect the innocent and call the kindergarten teacher Mr. K and this year’s teacher Ms. C, but don’t let the Ms. fool you either, she is not that old, she graduated Carlsbad High in 2003. (I know most of you already think I am prejudiced just on that basis, but she really and truly is the real deal!!!)

Let’s rewind, back a few years to make sure you really get the significance of today, Austin’s 9th birthday and “Back to School Night” for his 2nd grade classroom.

In kindergarten, Austin was the test case for mainstreaming the “nonverbal” child who was of course nowhere close to working academically with the class. I honestly believe the team was politely trying to show us he could not handle it, but they gave it the best team effort of saying we could try it with the kindergarteners, since his goals were closer to what they would be doing academically. I think what the team missed was my wanting Austin in this class was not my want; it was really and truly what I saw as what was appropriate for him. I would sit with him at football games and I would see he would watch Emily and the other children. He would watch so intently and want to play with the kids but he just did not know what to do to play or to get the children to play with him.

Back to School Night kindergarten, we had walked in and I think we actually surprised Mr. K when he realized we were at “HIS” Back to School night. No one had really given him the heads up that a) Ed and I were PITA’s and B) we were expecting real mainstreaming, even if for our child meant the socialization part of mainstream!!!

When we walked into “Back to School Night” he was shocked. I think he thought we would go to the special education classroom for “Back to School Night”. After the normal talk about how his classroom worked, he spoke to us personally and explained why he did not have the 1st day picture of Austin up or the leaf project that had not been sent home, which he quickly fixed by handing one to us and promised they would be up until the end of September. He also explained how they were still working on all the details since Austin was the ”first” nonverbal child with Autism he had and that no one had given him direction on what was expected of him.

Bottom line Mr. K. made the effort; he made us feel welcomed and wanted, even though Mr. K told us numerous times he was inexperienced and new at this and unsure what our expectations were. We walked out of Mr. K’s class that next summer with numerous kids knowing and loving Austin. Mr. K did his part and we would see peers in the community and they would all run up and talk to Austin, even though Austin was still unsure what to do.

Last year, we walked into Miss O’s 1st grade classroom hopeful and full of happiness that Austin was going to mainstream again part of the day. I think we may have actually walked in with rose colored glasses, because I guess we both thought, that maybe Mr. K or the special education teacher from the year before would have given Miss O and Liz the new special education teacher the heads up that a)Ed and I were PITA’s and B) we were expecting real mainstreaming. (Between you and me, I think the only memo given was that we were PITA’s and they were not saying that affectionately.)

We walked into the mainstream classroom on “Back to School Night” and tried to find Austin’s desk, there was not one, because he did not have one. After listening to Miss O speak for 45 minutes on her class and how she does things, we started to explore the classroom and look for Austin’s colored person the children of the class had done, Austin’s pictures, or that Austin had even been in the classroom and that the teacher of the class actually felt he was a part of the class. We found NO clues of any of the above mention items, in our minds Austin had never been part of this class and WAS NOT part of this class. As we were waiting to speak to the teacher we were chatting with another set of parents we knew. Finally Miss O came to speak to us and the other parents, I inquired about why Austin did not have any of the above mentioned items, and she curtly told me she did not have time. When I inquired if she might be able to at least take Austin’s face picture and put one on the bodies the kids had colored so the other kids would know he was part of the class, she again curtly said she was very busy and when she had time she MIGHT download her camera, she might get be able to get to it. (Luckily for her, by this point 5 years into the Special Ed game, Ed had taught me to at least try to bite my tongue or take her head off, and I was partly in shock that someone would just come out and be that rude about having a special education child in their classroom. She was also very luck because Ed had just had his tonsils recently, because he was livid!!! Normally when we are upset the letters to the district come from me, this particular letter came from Ed the teacher and father of Austin and stressed how inappropriately she had acted.)

Unbeknownst to me at the time, the non-special education parents we had been speaking to had a conversation about this after they left the class. Husband, who really had no knowledge of Austin expect a kid named Austin had Autism and was his son M’s friend from kindergarten, says to his wife. “Isn’t Austin in the class? Why didn’t he have a desk or any of the other things M had?” Wife says to husband, “Yes Austin is in that class and when I was asking Miss O why Austin did not have a desk or name tag, Miss O said she was sure where he would be in the class or what he would be doing.” My point of this part of the story is even the dad of the mainstream class could see all the glaring issues with this teacher and her classroom. So when the wrongs were abundantly clear to Ed and me, I know for a fact it was not over reacting, even though we may have;-). The mom later told me she felt like the teacher had with her actions and word said Austin was not a part of the class; she just had to have him in the class.

To make sure the story is clear, in both Kindergarten and 1st it took over a month to get Austin to even step foot into the classroom, so he also missed all the bonding and friendships that are made that can only be made in the beginning of the year. They were only mainstreaming him at lunch, which was not at all what we wanted.

I want to make it clear Liz, our wonderful and awesome special education teacher, was NOT our special education teacher in Kindergarten, and had JUST walked into this situation new in 1st grade. The plus was she had been our districts NPA ABA supervisor and was familiar with Austin, just not with the mainstreaming or the mainstream teachers.

So poor Liz, I walk into speak to her at the end of Back to School night of Austin’s 1st grade year frustrated. I did not scream, I did not yell. I did not even really cry. The tears that fell were tears of frustration. I explained calmly to her all the issues I had with Miss O and how these were the days that as a parent of a child with Autism you truly know what you are missing. I will say honestly Austin is my 4th child, I really already knew what I was missing, but I think these are the types of moments that parents of a 1st child who have a disability truly get mugged by the disability. I just got a little punch in the chest and the wind knocked out of me, but most parents wake up days later from this type of moment still dazed and confused and ANGRY!!!!
We walked out of 1st grade knowing Austin had made progress, knowing that he still had mainstream kids greeting him out of school and Austin demonstrating those skills in public, but still not sure that Miss O didn’t only know his name because of the letter the special education director got after back to school night. I am sure Miss O will never forget us, or Austin but I am sure she learned nothing from us and is happy we are now an almost distant memory.
Fast forward to today, to Austin’s 9th birthday and “Back to School” night. We walked in, immediately found Austin’s desk. When the teacher came over she said “hi” to Austin, he responded appropriately with a smile on his face. She told me how excited she was to meet us, and how Austin was already fitting in with the class (which he started attending on the very 1st day of school) and how UNPROMPTED, when his device failed he waved goodbye to the class unprompted to the class as he left his time in mainstream, earlier in the week. Ms. C said she was very excited when she was told by Beth (our wonderful 1:1) that we had been working on that skill with Austin for 3 years, I had the awesome moment to say to her,” no we have been working on that skill since he was 3 years old.” After I left I realized that is not even a skill we have been working on, we have been worked 6 years saying “hi” and OMG he said “goodbye” UMPROMPTED!!!! We just started working on that, and OMG this is huge!!!! What a great birthday gift to MOMMY and it is wasn’t even her birthday, it was Austin’s!!!

As I close this out tonight, my birthday wish for Austin and his friends with Autism and other disabilities, is to have PITA’s for parents, to have parents who listen to their guts and push beyond what anyone else thinks their “Austin” can do, because parents ALWAYS know best. I want them to have special education teacher’s like Liz and Michelle who believe as much as the special education parents do that our kids with IEP’s can and will do this, and I want them to find a Ms. C, who is the mainstream teacher who is willing to step outside her comfort zone and make it happen for a kid with special needs! If every mainstream teacher took this approach the likelihood of every child with Autism or a disability getting a job and being a productive part of society would sky rocket. The studies show for every $1 you spend on early education you save $7 special education and jail time. Our kids with special needs need as much independence and socialization, training, and as much services as possible when young because the studies show every dollar spent saves $7 dollars down the road. Be fiscally responsible sooner then later! You as taxes payers will spend for my child and all like him, but where do you want to spend it? I am voting on making him a tax payer and not a tax taker.

My goals for Austin are the same as for my other 3 children. I want him to be a tax paying citizen, I want him to be a productive part of society that is not dependent on society or at least the least amount of dependent, I don’t care if he the president of Oakley (a very Autism friendly company, that supports Austin’s favorite Autism charity TACANow.org) or a greeter at Wal-Mart, I want him to be independent and happy. The only way to get these kids who are independent, is to give our kids what they need is time and money and that does not even just apply to kids with Autism. It takes a village to raise a child, it a takes a nation to raise a child with Autism. With the numbers being 1:110 we need this nation to step and fund the services kids need. Put the money behind IDEA to make our kids productive parts of society who are not dependent on it.

As always thanks for reading and PITAup and change the life of a child with Autism, the life you change might just be your own!!!

Next's Blog topic: 10 Things Parents of Children With Autism Wish the Hotel/Travel Industry Knew

Augmentative and Assistive technology with Proloquo2Go, the +'s & the -'s from a Parent Perspective

Due to some awesome new apps, kids with Autism are now having access to inexpensive augmentative and assistive technology through companies like proloquo2go and good karma applications. In the past devices that spoke for children who were non verbal ran between $5000 and $10,000 and had to be covered by school districts and insurance. They were time consuming to get paid for and unfortunately were not user friendly or parent friendly. Parents were dependent on Speech Therapists to program the devices. They were also huge. It was like carrying a mini lap top with you at all times.

Today that has changed; unfortunately most school districts and insurance companies will not cover an iPhone or an iTouch because those are considered luxury items and not tools for communications. You can get the proloquo2go covered by flex spending if you have it. You can not get the iTouch or iPhone covered.

I have found some down sides to the iTouch, for one the games! The games are great to help with the fine motor, but they are also a distraction, Austin would much rather play games then use the device as a communication device. At school they are seeing much more success then we are.

The next issue is there is really no great case for the iTouch to protect them from a kid with Autism. Trust me I have bought many and I have not found any case that comes close to the OtterBox for the iPhone. I honestly hope the Otter Company takes the iPhone design and adds an external speaker to it. It would be a god send to our community. For that matter it would be great for anyone with young children who just use the iTouch for games.

The last issue will hopefully be resolved with the latest addition of the iTouch in the fall. It is the lack of a camera. One of the awesome differences between the $5000-$10000 and proloquo2go is the ability to make a talking PEC at a moments notice. Literally I , the parent, are not dependent on a speech teacher, I don’t need a computer or fancy program, I can make a new icon in under 5 minutes.

So after talking about these concerns with my friends who do not have a child with Autism, I was offered my friends old iPhone for Austin. She is giving me her phone and I am going to separate Austin’s toy from his Speech device. We will only have proloquo2go and First Then on the iPhone. On his iTouch we will have all the games he knows and love and it can be a much valued toy like I discussed in my April 10, 2010 blog.

We further discussed figuring out a way to get old, but working iPhones donated for local San Diego families who can’t afford them. My friends at PSHelper have generously offered to offer 40% off any plugin on their website when you send your used iphone or itouch to us to give to kids in the San Diego area with Autism. Use code "donate40" at checkout, they will contact you shortly after your order is received. There is no bigger generous offer then someone who can give the gift of speech to a child with Autism. This cuts the cost in half for parents who already pay so may expenses out of pocket, things that insurance does not pay like Occupational Therapy, Physical Therapy, ABA, RDI, Biomedical, the list goes on and an on.

By donating your old iPhone or iTouch to PSHelper, not only can you earn a discount you can help a child with Autism access his or hers voice through assistive technology and help parents who can’t afford such technology on their own.

I would encourage you all to PITAup and ask the same thing of your local friends who do not have a child with Autism to donate their old iPhone or iTouch to a child with Autism. Maybe we could make this project nationwide and make the gift of speech nationwide! So go out and 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.*

“By ‘alive,’ I don’t mean just ‘not dead,’

“By ‘alive,’ I don’t mean just ‘not dead,’ either. You’d think my mother would have been satisfied for me to live at home, tucked away from the world where she could protect me, but for her, that wasn’t living. She insisted that I be great.” Jonathan Morrow Author of

http://www.copyblogger.com/fight-for-your-ideas/

(I hope when your done reading you come back to read my thoughts on this blog and post your thoughts)

I really, really encourage you take a moment to read this link. It truly changed my life and I think you will want to share it with every parent of a child with a disability that you know!
I think sometimes we get so wrapped up in how the disability affects us that we forget how it affects our child and how our actions will effect the rest of their lives. The above blog was written by a disabled man whose doctors did not expect him to survive early infancy. In his blog he describes what his mother did for him and how it changed his life.

For me as a parent of a child with Autism, even before reading blog have always pushed my school district to the extreme for Austin. After the first year, Ed and I made our district move Austin to another district for appropriate services, when we finally returned to our district 3 years later we pushed for the program to change. Our child is the first non verbal child with Autism, who was not working at grade level, to be main streamed partial day in Kindergarten and 1st and succeed. I do believe the district did not think he would succeed, but he is. For me success is seeing the work you are doing at school or therapy, work its way into real life. For us what we wanted was socialization, for Austin to be able to make the connection with peers in and out of school. Can he go out and play on a playground today like a “normal” kid? No but his is trying, he waves to say hello and he tries to engage other kids we are getting there at almost 9.
This article always reminds me who I am fighting for. Since this blog is from the son's perspective of what his mother gave him, it puts things into perspective for me and what I need to do for Austin. Every time I read it is like the first time. It challenges me to go on and do what I need to do no matter how overwhelming it is, no matter how intimidating it is.

“When my elementary school principal decided that disabled children didn’t have a place in her school, my mom appealed to the school board and turned every board member’s life into a living hell for two years.

She won.”

How many PITA parents do you know that have stories just like this? I know a lot. I personally can’t wait to hear them all write a blog or tell their story just like Jonathan has on how we did something similar for them.

I know it Austin’s almost 9 years of life I have a few of these. My favorite is sitting at an IEP meeting and asking for Vision Therapy and at entire school district team and by team I mean two school districts looking at Ed and I and having the audacity to say something to the point of Austin will not like this type of therapy. Being me I responded with a smart arse response of, “I do not chose things for my children by what they like, otherwise my older children would be out smoking pot and drinking alcohol”. The room was quite and Austin got Vision therapy, which is in it self another blog and an amazing therapy!!!!!

So today my challenge for you is to book mark Jonathan Morrow’s Blog and when you feel discouraged and that there is no hope, pull it out and read it.

Remind yourself of how you want your child to tell the story of what you did for him or her. Honestly the only people our kids have that they can depend on is us. So go out and 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.*

Thoughts on Autism Speaks from a Volunteers prespective

As I clean my 10 year old eMachine (or what was formerly called the kids computer until the laptop bit the dust a few months back) tonight, I was amused to find a link to Autism Speaks 2006 tax return. The original link is now broken, but you can access the tax return at Autism Speaks website. Finding this link made me wonder if other people wonder why I am so bitter towards Autism Speaks and maybe that this might be a good time for to tell about my life before Autism and why it frustrates me that an organization who raises so much does so little for families and kids with Autism.

In June of 1997, my husband graduated from Cleveland State. With our 2 children, Ashley and Nick, age 7 & 5, in tow we packed everything we could into our Plymouth Neon and a turtle shell thing on top of it and headed back to our home town, Carlsbad. You would seriously laugh at the things we brought with us in that tiny of a car. Our clothes, obliviously, what ever toys the kids could fit in a back pack and play with on the ride, our TV, stereo and video games all squished in the trunk. We honestly did not care if we had nothing we just wanted to go home to Carlsbad.

Unfortunately there was one Primer who was NOT so happy with leaving her friends and basically her entire 2nd grade life. The school year was tough with Ashley missing her best friend, Emily Kestner, and trying to adapt to a new way of life and new friends. So Ashley was promised she could do cheerleading through Carlsbad Pop Warner. I went in March of 1998 to sign her up; I was looking for her a scholarship. I try really hard to never promise my children anything I can’t deliver and here I was basically looking for the most favored toy at 6pm on Christmas Eve, and hoping I could deliver since I knew our budget could NOT!

Ed was working as substitute teacher in Carlsbad Unified School District, and I was subbing as anything and everything in San Deiguito Union High School District, we were trying to make ends meet and keep food on the table and gas in the car. For anyone not familiar with how substitute teachers (or any other sub position) in a school district get paid here it is. In the state of California, you get paid a month behind. Basically you work September 1st thru the 30th and then get paid on October 31st. It’s a long, long, did I say long time between pay and work.

So long story short, my stint in volunteer work began. They gave Ashley a scholarship as long as I coached 10 little 7, 8, & 9 year olds in cheerleading, something I had never done, EVER!!!! This led me to join the Carlsbad Pop Warner Board the next year and eventually co-run the Carlsbad High School Football teams snack bar for 5 years.

By now your wondering what in the world does this have to do with Autism Speaks? In reality it has EVERYTHING TO DO WITH AUTISM SPEAKS!!!

I know when you hear snack bar, you think oh like we had at Little League, candy and pop and maybe a hot dog if you were lucky, and let me tell you that perspective is completely wrong. At the high school level it’s huge! We had sales between $5000 to $10,000 a night on an average of 4 or 5 regular season games and hopefully 1 or 2 play off games with home field advantage.

To put this in to perspective, at the time I worked at the most popular breakfast place in Carlsbad, Don’s Country Kitchen. Don’s has 7 inside tables, 8 counter seats and at the time 4 outside tables. A very, very, very small restaurant! On Sunday morning between 7 am and 2 pm (7 hours) we averaged between $2000 and $3000 sales a day. Our football snack bar between the hours of 4:30 pm and 9:30 pm ( 5hours) was averaging $5000 to $10,000 a night and at that we did it on volunteers, no one was paid. Over the 5 years I did it I worked pretty much with Kelli Strawhun and Wendy Butler for hours at a time, we did all the purchasing, pretty much all the stocking and pretty much all the scheduling. Emily and Austin pretty much thought the snack bar was a second home. Kelli, Wendy, and I never took money for any of our time, none of our home copy supplies, internet usage, gas, and mileage on our car from shopping or pricing different products to get the best price or begging local stores to give us free stuff or at least discounts to cut costs. We were in it to lower costs to help kids who could not afford to play, for bigger and better football and cheer gear, and to pay the extra stipends the school district did not cover for coaches. We were in it for the kids.

So the moral of this story you ask? The moral is here is a community project I worked on, where I raised the money, I did not have a child on the football team at Carlsbad at the time, but I did it without advertisements, with out celebrities and without putting the bottom line in jeopardy. Waste not want not was our motto.

Yet here is this giant Autism organization, with a great little logo, or as I call it the evil little blue puzzle piece, raising $60 million dollars a year and I have yet to find one child this money actually helped., actually made a difference in their life. Over the life of my husband’s football coaching career, I can find many children who are now adults that the money raised at that snack bar, no matter who ran it, had their lives changed for the better because of the CHS football program. No matter where I go in my community, I hear people yell out for me or my husband and thank us for our work and ask how our kids are doing. We made a difference, my husband is still there making a difference.

Our football program now also has (off the top of my head) 3 NFL players who are giving back to the Community of Carlsbad. These are people who now make a difference because some one fundraised so they could play high school football. We also have many successful graduates in many other professions who give back to the program and many kids who go into teaching and coaching because of their love of the sport. This love came from the CHS football program that was fundraised by parents!!!

For Autism Speaks I still only see their bottom line! A Park Ave office, huge salaries, huge travel expenses and yet in my journey over the last 6 years of Autism I can’t find one family who yells from the mountain tops Autism Speaks helped me, they changed the life of my child.

So when you hear my adorable 10 year old say with a straight face, “Autism Speaks does not speak for the Primer’s, TACA does”. Please realize there is a reason, a very important reason they DO NOT SPEAK FOR US or anyone we know.

I post often on Facebook and on my blog on why I like certain Autism Charities, but the number one reason is I can find many families shouting from roof tops saying how this organization’s changed their child’s life. As for Autism Speaks and their $60 Million budget, I have yet to find one.

As always here are my favorite Charities for Autism, in no particular order, but have given me nothing physical, but have give me the ability to change my child’s life, gave my child camp, gave my child the ability to surf, lobbied for my child with Congress or just educated me along the way. I don’t need physical stuff, neither do the rest of my friends who are Autism parents, we want them, but what we need is tools, tools to make our kids lives better and for our kids to have a chance to be productive parts of society and not a burden on it. So please support the organizations that support us…

Talk About Curing Autism Now (TACA)
Surfer’s Healing
Autism Society of America, San Diego Chapter
National Autism Association's (NAA)
Autism Link

Generation Rescue

Mom's Against Mercury

Safe Minds

(I am sure there are other’s I missed please feel free to remind me and I will add them, also)

I will close this with the next time some one asks you for a $1 to put your name on a little blue puzzle piece, please politely decline and then write their corporate offices and tell them Austin Primer prefers Autism Charities that actually help kids!! Until next time PITAup and do something to change the life of a child with Autism, the life you change maybe your own!!!