Nature's Warning signs say you should remember "Special needs kids are not contagious"

The picture with this blog is Austin and Malcolm after their mainstream end of the year play. Malcolm is directing Austin to look at Malcolm's dad so they can have their picture taken. We rarely catch a picture of Austin with a smile on his face even though we see it regularly. This picture leads into this blog and my thoughts and feelings with it.

On 6/5/11 I read a heart wrenching article on a parent telling a parent like me, how they had "pity for me" but how a child like mine did not belong in the mainstream classroom. This article touched me so much that I started writing a "thank you letter" to my child, Austin Primer's, mainstream friend's parents. It concluded with Ed reading the article and editing "our" letter.

Ed at first did not really want to edit the letter, it was the end of the day and he was like "please can I do it tomorrow?"

Then he read the same article, “Special needs kids are not contagious” by Jo Ashline and he responded, "why do we never meet "these" types of parents? Haven't they seen the poster?"

Ed has a long running joke that there needs to be a t-shirt or poster that says “Natures warning signs”, and the poster will show pictures of a Rattlesnake, a Cobra, a Puffer fish and Shannon Primer.

After reading Jo's article he was happy to help me for once not be one of "Nature's Warning signs" and to write a letter from our heart to the children and parents of Ms. Coulter's 2nd grade class at Hope Elementary School in Carlsbad, CA. Here is our letter...

6/9/2011

Dear Ms. Coulter and the Parents and Children of her classroom,

As parents of a child with Autism, we are very blessed to live in a district that feels a child like mine, Austin Primer, is important. Evidence of this is in his being mainstreamed and being an important part of his community. Not every parent of a child with Autism, especially a non-verbal child with autism, gets to experience this.

Recently we read an article from The Orange County Register that reminded us how not every child like Austin is lucky enough to have classmates that realize that children with disabilities are important members of society or classmates’ parents that realize what affect that their child and they have on the special needs community. Parents and peers make a huge difference! Austin is fortunate to grow up in as an accepting community as ours (please see attached article).

We want to thank you for making that difference and for allowing your child to be an important part of our child’s learning environment. We cannot express to you how much this year has been an amazing experience and what an affect it has had on Austin, and in turn on every special needs child at Hope Elementary. From the bottom of our hearts, you and your children amaze us and here is why…

Our child with autism has worked on become a member of your child’s community over the past three years. This year it really struck us how amazing our mainstream children in this classroom are and how they have come to accept, appreciate, care and look out for our child who has “different needs and abilities”. Every time one of your children comes up to Austin and says “hello” at school or in the community, Austin’s face lights up. It reminds me why we continually work with CUSD and their amazing staff to push Austin and our Hope community for more. It amazes us how “our kids” never let us down.

It truly makes our hearts proud daily that; instead of me saying “my kid” (i.e. special needs kid) or your kid (mainstream kid), we can and do say “our kids”. We know that “our community” and “our school” are making this possible. Our District and our community will be better because of it and without each of your children and your support this would never be possible. After reading the attached article, it allowed us to have a clearer understanding of how different Austin’s program is and how different it is for most of his peers with Autism.

For all those who have invited us to a birthday party this year, thank you! We apologize that we did not attend. This year we have worked very hard on “mine and yours” goals and taking turns at home and school. Austin is just about at the point where he can do these things in social settings like a birthday party. Our goal is for Austin to attend these parties as invited during the next school year.

We hope that this letter truly expresses to you how much our family appreciates your families and how thankful we are for being part of the awesome supportive community that Ms. Coulter, her students, her student’s parents, Mr. Tubbs and the Carlsbad Unified School District are cultivating. We know not every family of a child with Autism is as fortunate as we. Also, we know Austin is truly blessed because he has been a part of Ms. Coulter’s class and that Austin was able to have your child as a classmate. Thank you for encouraging your child to look beyond Austin’s differences and for being part of an amazing mainstream team that has never said Austin did not “belong” in “their” classroom. You all have made this year the year that Austin is truly a part of a classroom and part of his community. Without you and Ms. Coulter, Austin would not be thriving. Every day you bless us by sharing your child with ours and you give Austin a better opportunity to be a future productive part of society. Your children who are our future politicians, future business owners, futures tax payers and future voters are already making a difference. They are already making our community well-rounded and as a result, will continue to grow into well-rounded adults who are concerned about and value people with disabilities.

Thanks to you and your children, the life of Austin Primer and his peers with autism looks a whole lot brighter. Thank you for helping Austin and his special needs classmates to a better tomorrow. Also, thank you for not making me the parent in the OC Register article; we are forever in your debt and we “can only hope that (we are) as contagious as humanly possible”.

Sincerely,


Shannon and Ed Primer
Austin’s Parents

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!!!