Don't Be Fooled by the "Gluten-Free" Hype Email From Vitamin Research Products®

Dear Vitamin Research Products®,

I wanted to let you know I found this mornings email and the link in it about the gluten free diet to be misleading and offensive.  

As a parent of a child who has severe GI issues and has been Gluten free, casein free, and egg free for 8 years, I can assure the diet does work and it is not a Hoax! I think sending out that email could be very misleading to someone considering doing the diet.  While the gluten free diet, as with all diets, supplements, medical treatments, prescription drugs and alternative treatments, do not work for everyone, BUT they do work for some. Calling gluten free a hoax is NOT appropriate, not true and a disservice to all of your customers. In addition many people who try gluten free diets, may actually need a more restrictive diet than gluten free, for my child, he has to also be egg and apple free and needs digestive enzymes. 

I think this email could have been handled better by better phrasing such as, "Are you gluten free and still suffering from digestive problems?". Instead of insulting a huge core of your customer base and dismissing a very worthy and appropriate treatment for many GI issues and celiac's disease!

Until you send out an apology to your customers who follow the diet and revamp your page, I will no longer be purchasing your products nor recommending them. I will also be suggesting that all autism friends, gluten free friends, and celiac friends do the same!

Bottom line consider your customer base before sending out misinformation on valued treatments!

Sincerely a former customer and Austin's mom who believes in gluten free!


P.S. For my readers if this offends you also call, (800) 877-2447, and tell them it offends you too!!!

Autism Awareness Month, I am over it!!

Call it what you like, but Autism Awareness Month does not help me or most of the parents I know. It more reminds us how alone we are and how the big blue puzzle piece uses this month to suck more money out of our community and away from charities that actually help families like mine, but I regress.

This years "Autism Awareness Month" is especially painful. Every year I read about parents who kill their children with autism and sometimes themselves, but this year it hit me especially hard as it not only my community, it is not just my state, but it is my county, San Diego County. A mom, killed her child and possibly tried to kill herself. I am consumed with guilt, even though I have never met this woman or her child. I just know I could have been this woman and Austin could have been this child. The difference between me and her, I am not sure. I like to think it is my two older kids who were teens during the years of hell, the years of poop smears, not sleeping, trying to figure out diet, biomedical and services and an awesome brother-in-law, mother-in-law, sister and mom who were on my side and did not under mind me or Ed through the whole process of trying to figure diet and biomedical out. And yes I did list the in-laws first for a reason, most moms I know have some issues with their own families but they have more with their in-laws. For me I never had an issue for with any, they were all on team Austin and still are. I thank God daily for the fact that I have a team of family members who "get it", but I know my fellow PITAs and Warrior parents are not all as lucky as me. I know most of my friends do not have the family support I have.

I worry about families who do not have the support I do, the families who have no family support, no community support and no one to listen to them and know that they are not alone. I can only imagine how Daniel's mom felt, how alone she was, how desperate she was and what could have overwhelmed her to the point that she would hurt her own child and try to hurt herself. I pray for Daniel's dad, I know he is feeling guilt, and wondering how he missed the signs, I worry he will never get over it, I worry about him being alone. He is now in two worlds but does not belong to either, he had a kid with autism and he had a kid that was murdered, he is a lost soul, I am sure he is also confused about his feelings about his wife, the mother and murderer of his child. I look at my own husband and I project my own feelings onto him in two ways, 1 what if I was Daniel's mom and had done this and what if he was the one who had done this. I have no answers. I have more questions than answers. I am confused. I am overwhelmed. And again I am thankful, I am thankful that 6.5 years ago, I had more support than I knew and I am not Daniel's mom, I am Austin's mom. I am also Ashley's mom, Nickalas's Mom, and Emily's Mom, I am Tanya's sister, Clem's sister in law, and Sandy's daughter and Ed's wife, and Shelly's best friend, and even though my best friend would be the first to say she can't watch Austin she is there always to back me up and if I called her she would know who could and would get both me and Austin the help we needed immediately.

I am a lucky one, I had a team behind me. A very supportive team or as my sister calls them my "ASS", my AUTISM SUPPORT STAFF, they along with my fellow PITAs are my life line. They are what keep me moving forward and what makes me know tomorrow will be okay!! MY PITAs and my ASSes are also what keep me moving everday. I know I can ask for help.

I pray daily to make sure every parent like me has at least a PITA or an ASS. If your not a parent of a child with autism, I pray you will be an ASS, we need you, we desparately need you!!!

 

Seriously, I'm in love with Jillian Michaels. Don't HATE me!!

Seriously, I'm in love with Jillian Michaels.

And before you send me hate mail and tell me she posted an anti Andy Wakefield link on her Facebook page, let me tell you unfortunately I know! And unfortunately I had already purchased the video and was over a week in to her "30 Day Shred" before I was told of her possibly being pro vaccine.

Being a poor autism mom, I had already spent the $ and was feeling the burn from the DVD. Considering the norm in my world is that there is no extra money and generally no physical burn from exercise out side of chasing the kid with autism, I decided I would continue with the 30 Days since I already had opened the DVD and could not return it.

For the any of you who do not want to give her any money I recommend seeing if you can rent it from the library or Netflix. It is less than $10 on amazon.com so she can't be making that much off it anyways!All that aside as a parent of a child with autism I know most of us are on limited time, especially if you are the parent of a child under the age of 5. You are also low on funds, because if you're on my friends with me your probably spending all your money on supplements, gfcf everything free, organic, therapy and more things than I can name. So this video is made for you! For under $14 which just is the cost of the video and two 3 pound hand weights ($34 if you buy an exercise mat) and just 20 minutes of time in 30 Days you can also be in much better shape and much healthier! I know you are also like me and know we have to live forever for our child with autism so being in the best health you can be is the most selfless thing you can do! Beyond the physical health, exercise is also an amazing mental health remedy and when you are done with the 1st 30 days and you apply yourself, I can guarantee your self esteem will be higher also.

How can I guarantee that?

After just doing Level 1 of 3, I went from:

31.2% body fat to 27.2% body fat

I lost a total of 12.6 inches, 4 in the waist and 2.5 in the hips.

I gained one pound, which is all muscle!

AND I still ate out, had ice cream and drank beer occasionally. I do eat lots of veggies, eat appropriate portion sizes and take half home when eating out, but I generally do not give up anything when I am working out, I just try to eat less!! I have found allowing my self to at least have some of my favorites leads me to never having to binge eat!

I use the bodybugg system which helps you track measurements, weight and will figure your body weight. If you are not willing or do not have the funds to invest in the system then I have a few recommendations to help you. The most important thing in any weight loss program is not knowing your weight, it is know you your measurements. When you stop losing weight and if you have not done your measurements you will get discouraged and give up. At that point in time you are gaining muscle and muscle weighs more than fat, so you will need to confirm you are losing inches to keep you on track. Start an excel file with your starting weight, and the following measurements: neck, upper arm, forearm, chest (I measure under the breasts, think bottom strap of your bra to make sure I have a consistent area to measure), waist (I measure at the belly button), hips, thigh and calf. My Fitness Pal is free website/app that can also be used to track your food consumption, weight, neck, waist and hips. I know that when I started losing weight the last thing on earth I wanted to know was my measurements, but when I hit that first plateau I was very happy to see even though I had stopped losing weight that I had lost inches.

The 20 minute video consists of 3 levels, each level consists of a warm up and cool down and 3 circuits of: 3 minutes weights/resistance training, 2 minutes cardio, and 1 minute abs.

Thanks Autism Speaks for again doing nothing for us on World Autism Day!!!

Dear Autism Speaks,

I had decided to not write about you this year for Autism Awareness Day, until I got the following e-mail from you.

Autism SpeaksiPad2 Application


Dear Applicant,

Thank you for applying for the AutismCares iPad2 Grant.

We received 13,000 applications from around the world, but could only consider families located in the United States.

Although your family was not awarded this time, your application will be kept on file in case we are able to donate more iPads in the future.

For resources, toolkits, and much more information for you and your family, please visit autismspeaks.org

Sincerely,


Autism Speaks


Since you decided on World Autism Day to blatantly slap me across the face and point out how little you do for my family, my non verbal child with Autism and our autism community, I've decided to go ahead and write a blog and open letter to your organization.

I'm at a loss on how an organization that raised $50,238,297 dollars, almost $17 million spent in salaries, another $17 million on "other expenses" in 2010, couldn't possibly use some of that $17 million in "other expenses" for 2011 on 13,000 iPads. I was at Walmart this morning and the iPad 2 is only $399.00 and would only be $5,187,000 and would actually benefit the people you claim to be fundraising to help. As far as I can tell from your tax return is the only people you are really helping are those who are paid their salaries by you.

As for our non verbal child Austin and him getting a much needed iPad, I guess we will keep plugging along on how to fundraise a bit of the money away from you and into Austin's fundraiser.


For Austin Primer and the rest of the 1 in 88 kids with autism and their families that your NOT SPEAKING FOR, let me say thanks again for NOTHING and I hope you suck that blue light bulb and choke on the little blue puzzle piece.


Sincerely,


Shannon Primer whose proud to Speak for herself and proudly wearing black today!!!

Fundraiser for an iPad, Case and Warranty for Austin Primer

We are fundraising for an iPad for Austin Primer. Austin is a 10 year old boy with Autism. Austin is non verbal, he has been through several talking devices. He has the most success with the iTouch and Proloquo2go. The downside to the iTouch is its size. Austin many times has to go back because it is to small and he hits the wrong PEC. An iPad would make navigating Proloquo2go easier and give Austin a better chance at success at communicating with his friends and family.

Austin would also need a case. iAdapter is getting good reviews for protection and the fact that it has built in speakers. You can also hide the home button so that you can't leave Proloquo2go which Austin often does on the iTouch. Not being able to leave the program will also help Austin be more successful.

Even with the best case we would also get a SquareTrade.com warranty to protect against damage.

Thanks for reading, hopefully donating, and passing along our link to anyone who you think could help Austin.

I hate you all equally!

For my children, I know sometimes you think I love Austin most but I need to tell you that is not true! I love Austin like I loved you as a baby! You all were an open slate with so much potential you also were so vulnerable as all babies are! The difference between you, Ashley, Nickalas, and Emily, is you have had the opportunity to move beyond being a baby, toddler, preschooler, kindergartener, middle schooler, and high schooler, etc!

Austin has only had the opportunity to move passed baby! He is still at 10.5 a toddler! It does not mean I love him or you more, it means I love you are different, it means you all have different needs, each of you have something different that needs Loved! His needs, like those of a toddler will always exceed yours, that does not mean you are loved LESS, it means you are loved different! It means you are loved for you!

I hope some day you understand that! For me and my sisters it has always been my mom's statement that she "hates us all equally". For some that would mean your mom did not love you, but for me it always reminds me she loves me no matter what!

Thanks mom for always reminding me that a moms love is not always equal. It is what is needed!

Bullying

I’ve been a bit of a slacker lately and not been blogging as much as I should (yeah I know that is an understatement).

Unfortunately that is life and then add life of being a parent of a child with Autism, sometimes life is just overwhelming and if your children are feed, taken care of and the house is somewhat clean then the day was successful and you have to let the other stuff go, including blogging.

Today a pair of local radio personalities inspired me to come back and blog. Their post is actually not the first time I saw it, but it was the first time I saw it from any local celebrity or radio personality, which made it stand out to me (and yes I have more than one person on my friends list that is on the radio), this was the first time I saw a radio personality take on bulling).

The post that stood out was, “Special request to all you kids returning to school in the next few days: If you see someone who is struggling to make friends, or being bullied because he/she doesn't have many friends, or because they are shy or not as pretty, or not dressed in the most "in" clothes--PLEASE step up. Say hi or at least smile at them in the hallway. You never know what that person might be facing outside of school. Your kindness might just make a BIG difference in someone's life!”
As a parent of a child who suffers from Autism, I have worked very hard in hopes that my child will not be bullied in the future, or if he is I hope that he has a bunch of mainstream kids who are there to protect him. Hopefully this will pay off, but you never know.

Of course my child is only in 3rd grade and what most would consider more impacted (we in the world of Autism prefer not to use words like high functioning or low functioning, because those are never accurate on any level. In my world high functioning is potty trained, but for some parents high functioning is verbal. After 7.5 years in this world both descriptions are not really accurate as our children may not be functioning at a real world stand point, which to me as a parent of 1 child with Autism and 3 without would be that as an adult you can maintain a job and live independently.)

It breaks my heart daily to hear my friends, who are parents of less impacted children, talk about their daily struggles at school with bulling. It happens daily. We need to change the world to fix bulling, but a lot of that comes from parents in general. We need the world of parents to stop saying my child would not do that and be parents. Tell your child what is acceptable and that bulling is never ok. We also need parents of child with Autism, no matter how they are supposedly functioning to be honest with their communities. Tell the other children what is going on with your child and why they act different. In my experience when you do this, most children and their parents step up and will do what is best for your child who is different, think peer pressure, use peer pressure for good. When parents and children think a child is different and do not know how to explain why a child acts, different or weird, that is when the child gets alienated. We can change that.

The theory of it takes a village to raise a child is so true, and as our numbers of children with Autism rise it will take a village of other children who know and understand our children with Autism to grow up and understand our kids. I hope that as my 3 children without Autism and all the friends my child with Autism meets encourages other children to be accepting of all kids, and discourage bulling and encourages tolerance.

All it takes is one person or one radio personality or station to help with the cause. Thank you KSON and John and Tammy for stepping up. Here’s to me hoping you continue this outreach and helping our kids who are bullied and especially those with Autism.

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