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

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

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

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

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

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

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

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

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

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

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

We are here and we are NOT going away!

An open letter to Henry's or any Health Food Store who wants to be the leader in the industry for "Allergy Friendly Stores"

To Whom It May Concern:

I shop at Carlsbad (El Camino Real) Henry's Farmers Market almost daily. As a parent of a child with several food allergies, I cook from scratch a lot and seek gluten and casein free products which you as a health food store specialize in.

Unfortunately there is one place in your store that fails miserably at catering to families like mine. That place is labeling, especially labeling in the deli. I have found other mistakes, but the deli is the most blatant. Three times I have brought it to the attention of management that the listed ingredients in the BBQ Beans are mislabeled and could kill someone. YES I SAID KILL SOMEONE!!! Not listed on the ingredients list that is in the deli refrigerator area are soy and wheat. The majority of BBQ beans and Baked Beans contain soy sauce. 99% of all soy sauce contains Wheat. Anyone with an anaphylactic allergy to an undisclosed ingredient could go immediately into anaphylactic shock if eating this product, due to your mislabeling. According to http://www.allergy-clinic.co.uk/more-about-allergy/anaphylaxis/. “The most common cause of anaphylaxis in the community is from eating a food to which you are allergic such as nuts, peanuts, eggs, mammalian milk, soya, wheat, fish and shellfish. These 8 foods account for 90% of cases of food induced anaphylaxis. Peanuts and tree nuts (such as Brazil nuts, Hazelnuts, Almonds and Walnuts) are the foods most likely to provoke a reaction.”

After reading the actual label I can tell you that more than just those ingredients are missing.

Considering your company caters to families like mine who seek gluten free and other allergy friendly products, I am requesting that you perform allergy training with ALL your employees. In my opinion it should be training upon hiring and that you should also have training on this subject yearly to make sure that it is fresh in everyone’s minds. I also think that every time a product vendor changes the manager in that section should compare the printed label for the deli section to the new ingredients list.

As a parent of a child with allergies, I prefer the time to read the label myself then to have something mislabeled. I have been doing this 6.5 years and am not the average parent. I have a learned to adapt and have a keen sense on what does and does not have wheat, which is how I caught the BBQ Beans. Unfortunately not every parent is me, and especially new parents, they have to rely on correct labeling.

I also feel that when a question about labeling comes up, that any employee should be empowered to pull either the product or the labeling immediately until management can be consulted on the issue. The reason I feel this way is because theprevious 2 times that stand out in my mind the employee said ok I will let the manager know and left the mislabeled product on the shelf. The 1st was with an Ian’s product in the freezer section. Ian’s clearly uses red for gluten free products and blue for non- gluten free products. When the employee did nothing, I took down the gluten free sign and placed it with the appropriate product. The 2nd was in the fresh bread isle, a non-gluten free product was misplaced. I handed it to the worker and she promptly placed it back on the shelf and said she would tell a manager. I again promptly said that is not good enough and moved the label and the bread to a different shelf myself.

I fear my letter will discourage you from labeling. I really and truly do not want it to do that. I want it to encourage you to be proactive and be the standard the rest of the health food stores strives to live up to their standards. As food allergies increase we need more stand up companies, who make the effort to support our causes. Families like mine drive to stores who do this; a great example of this is a small family owned store in San Clemente, CA called Stella Lucy’s. I will drive the 26.3 miles, plus traffic, to check out what new gluten free products they have found that my local health food stores have not. I then test the products on my family and see how well I think they will sell locally. Once I have done that, I encourage my local stores to carry the products. I think Patrick of the Carlsbad (El Camino Real) Henry's Farmers Market can attest to. 3 products I have requested and 1 that I requested to be brought back are doing quite well in the Carlsbad Store. Maybe it is time for Henry’s to look into hiring someone with a child with food allergies to help at the corporate level with the decisions on what will and will not sell. Your own Sun Harvest brand of Organic Baked Beans, I purchased off the shelf, according to the label is in fact gluten, wheat, and soy free, it would be a great addition to your deli selections.

In closing I am asking you to stand up in the health food store industry and be the leader in allergy standards, make Whole Foods, Sprouts, Trader Joes, Frazier Farms and the other health foods stores want to be you.

Sincerely a loyal customer who shops Henry’s before any other store and almost daily,

Shannon Primer, parent to Austin Primer age 9 allergic to Gluten (wheat, rye, oats, and barley), milk (casein), egg and apple, who hopes to change the world of every person who has a food allergy.

A PITAup Prayer for the New Year

(I know many of us disagree on "Recovery" or “Curing” but I still pray for it, sorry I can’t lie about that and especially not to God.)

1) Recovery for every child like Austin
2) A supportive spouse or significant other
3) Friends who get you and Autism
4) Financial health.
5) The proper placement at school &/or living situation.
6) An understanding mainstream doctor.
7) Peace of mind.

Dear Lord grant that to me and my fellow PITA's. I know you answer prayer, I know I need to remember to pray, but please remember we the families of children with Autism are very much in need and in need of you, please remind us we just have to ask it of you to help.

Thank you, Lord and Savior, Jesus Christ.

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!!!