Facebook, marriage and autism, NOT ALWAYS THE BEST MIX!

Since my husband thinks I bitch and complain on Facebook and then erase it so he can't see it, I'm going to bitch and complain and hope he sees it on here and possibly on my blog, of course he would have to look at my blog, without me asking, and he only checks Facebook when he thinks he I'm bitching about him, but whatever, semantics!

So he posted today on Facebook for everyone to see, that everyone should know that from "4 pm until 2 am every day he has Austin."

Two people who have a close understanding of autism, but are male, 'liked" the post. 


So I thought I set the record straight. It is now past 3 am and I am still awake with Austin.

Which leads me to address Ed's complaints about time frames and how many hours a day Ed is watching Austin.

If you do not know Austin is an almost 11 year old with autism. When he was 2 he slept 2 hours a day. Since we met TACA and GFCfEF things have gotten better, but some how summer brings out the worst in Austin and Ed. Oh wait I see a common thread here, for both it is summer vacation. Ed is a high school teacher and Austin, well he is a student, one with autism. Both are not at school (Austin is at ESY but it is not the same) and out of their normal routine. For the mom/wife that still has to maintain a normal, stable life for both, it's never fun! It is summer and both are out of their routine and I must entertain them both and keep my sanity.  Is it football yet?  (Remind me of this subject mid October, when Ed is at football 24/7)

During the school year this is a stretch, and now both of you want me to do it 24/7? With neither at school?

Something has to give.

I guess it did today, when Ed posted and I was asleep until 2 am ( I did not go to asleep at 4 pm, but I guess since I did not get home from the National Autism Society of America Conference of America until 8 pm, Ed took some liberties is writing his "story". )

So lets start with Ed's issue, that not just yesterday, but most days when Austin is up until 2 am, Ed is watching him. I agree and give Ed huge props. When we dated we both stayed up late and partied hard. After having small children, under 3, that changed. Ed took the late shift and me the early one. Then the kids got big and we could both stay up late and the kids would play quietly until we got up.

Unfortunately we made the mistake of having a second set of kids and things did not turn out so well. We went through the baby stage and not sleeping and then we hit the toddler stage of less sleep, which at that time we did not know meant autism.

Things have gotten better, a lot better, since then, but with everything we go through it cycles and I'm pretty sure when Austin wakes up at 4 am, or like today still awake at this moment at 3:43 am that now I'm the one awake.

While my husband decided to take to Facebook to bash me on Facebook I'm going to point out that parenting a child is not the same as parenting a child with autism. Most parents cycle their kids into sleep habits, most parents of children with autism don't get that luxury and become snarky with their spouses.

When you see mine or Ed's snarky Facebook posts remember that we are not your average parent. We are parents living and dealing with life and autism.

I am thankful!!

A great life lesson: It is always good to say "thank you", you never know what the impact will have.

I had a mom come up to me today at the national ASA conference today and thank me for my posts on the yahoo groups, which I have not done since November 2008, and Facebook.  She wanted to let me know that my child, Austin, and his journey made a difference in her life and for her child.

I am very appreciative, because I it reminded me of 8 years ago, when I was  alone and doing this on my own with a search engine, and I found Dana's View. I stalked that poor woman, via yahoo groups (8) including GFCF Kids, an enzyme group and many others, until she brought me HOME, to Talk About Curing Autism NOW where I found, where I belonged.

If I ever meet Dana's View, I will thank her from the bottom of my heart, not just for Austin, but for the person who thanked me.  Dana's life changed my life, my kid's life and Andrea's family's life, we are all better people thanks to Dana putting herself out there.  I hope I can repay the debt I owe her, a debt she would never even think I owe.

I have said it a 1000 times, I do not have a recovered kid, but I have a completely different kid thanks to TACA and  the other TACA mom's and  the Dana's of the world who were brave enough to bring their stories forward or tell parents about organizations like TACA.  They were not held back by worry about their kids being PUNISHED or losing services, they were not be held back by fear, that if you told another parent about a service that a your school district gave you, they may take back that service or rescind it.  (And yes, I had a parent tell me that)  They stuck their necks' out and they said, (fu) I am going to get other kids services, it is not just about my kid!  The world I live in today is much better place because of TACA and Dana's View, I know many parents who are like me and pay it forward.

Life lesson, if you put yourself out there, you do make a difference, even if no one tells you it.  Someone is where you are today and needs to hear what you say.  You can change the world, it  starts with one person at a time!!!

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.