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!!!

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