Showing posts with label Jenny McCarthy. Show all posts
Showing posts with label Jenny McCarthy. Show all posts

Saturday, July 31, 2010

Thoughts on Autism Speaks from a Volunteers prespective



As I clean my 10 year old eMachine (or what was formerly called the kids computer until the laptop bit the dust a few months back) tonight, I was amused to find a link to Autism Speaks 2006 tax return. The original link is now broken, but you can access the tax return at Autism Speaks website. Finding this link made me wonder if other people wonder why I am so bitter towards Autism Speaks and maybe that this might be a good time for to tell about my life before Autism and why it frustrates me that an organization who raises so much does so little for families and kids with Autism.

In June of 1997, my husband graduated from Cleveland State. With our 2 children, Ashley and Nick, age 7 & 5, in tow we packed everything we could into our Plymouth Neon and a turtle shell thing on top of it and headed back to our home town, Carlsbad. You would seriously laugh at the things we brought with us in that tiny of a car. Our clothes, obliviously, what ever toys the kids could fit in a back pack and play with on the ride, our TV, stereo and video games all squished in the trunk. We honestly did not care if we had nothing we just wanted to go home to Carlsbad.

Unfortunately there was one Primer who was NOT so happy with leaving her friends and basically her entire 2nd grade life. The school year was tough with Ashley missing her best friend, Emily Kestner, and trying to adapt to a new way of life and new friends. So Ashley was promised she could do cheerleading through Carlsbad Pop Warner. I went in March of 1998 to sign her up; I was looking for her a scholarship. I try really hard to never promise my children anything I can’t deliver and here I was basically looking for the most favored toy at 6pm on Christmas Eve, and hoping I could deliver since I knew our budget could NOT!

Ed was working as substitute teacher in Carlsbad Unified School District, and I was subbing as anything and everything in San Deiguito Union High School District, we were trying to make ends meet and keep food on the table and gas in the car. For anyone not familiar with how substitute teachers (or any other sub position) in a school district get paid here it is. In the state of California, you get paid a month behind. Basically you work September 1st thru the 30th and then get paid on October 31st. It’s a long, long, did I say long time between pay and work.

So long story short, my stint in volunteer work began. They gave Ashley a scholarship as long as I coached 10 little 7, 8, & 9 year olds in cheerleading, something I had never done, EVER!!!! This led me to join the Carlsbad Pop Warner Board the next year and eventually co-run the Carlsbad High School Football teams snack bar for 5 years.

By now your wondering what in the world does this have to do with Autism Speaks? In reality it has EVERYTHING TO DO WITH AUTISM SPEAKS!!!

I know when you hear snack bar, you think oh like we had at Little League, candy and pop and maybe a hot dog if you were lucky, and let me tell you that perspective is completely wrong. At the high school level it’s huge! We had sales between $5000 to $10,000 a night on an average of 4 or 5 regular season games and hopefully 1 or 2 play off games with home field advantage.

To put this in to perspective, at the time I worked at the most popular breakfast place in Carlsbad, Don’s Country Kitchen. Don’s has 7 inside tables, 8 counter seats and at the time 4 outside tables. A very, very, very small restaurant! On Sunday morning between 7 am and 2 pm (7 hours) we averaged between $2000 and $3000 sales a day. Our football snack bar between the hours of 4:30 pm and 9:30 pm ( 5hours) was averaging $5000 to $10,000 a night and at that we did it on volunteers, no one was paid. Over the 5 years I did it I worked pretty much with Kelli Strawhun and Wendy Butler for hours at a time, we did all the purchasing, pretty much all the stocking and pretty much all the scheduling. Emily and Austin pretty much thought the snack bar was a second home. Kelli, Wendy, and I never took money for any of our time, none of our home copy supplies, internet usage, gas, and mileage on our car from shopping or pricing different products to get the best price or begging local stores to give us free stuff or at least discounts to cut costs. We were in it to lower costs to help kids who could not afford to play, for bigger and better football and cheer gear, and to pay the extra stipends the school district did not cover for coaches. We were in it for the kids.

So the moral of this story you ask? The moral is here is a community project I worked on, where I raised the money, I did not have a child on the football team at Carlsbad at the time, but I did it without advertisements, with out celebrities and without putting the bottom line in jeopardy. Waste not want not was our motto.

Yet here is this giant Autism organization, with a great little logo, or as I call it the evil little blue puzzle piece, raising $60 million dollars a year and I have yet to find one child this money actually helped., actually made a difference in their life. Over the life of my husband’s football coaching career, I can find many children who are now adults that the money raised at that snack bar, no matter who ran it, had their lives changed for the better because of the CHS football program. No matter where I go in my community, I hear people yell out for me or my husband and thank us for our work and ask how our kids are doing. We made a difference, my husband is still there making a difference.

Our football program now also has (off the top of my head) 3 NFL players who are giving back to the Community of Carlsbad. These are people who now make a difference because some one fundraised so they could play high school football. We also have many successful graduates in many other professions who give back to the program and many kids who go into teaching and coaching because of their love of the sport. This love came from the CHS football program that was fundraised by parents!!!

For Autism Speaks I still only see their bottom line! A Park Ave office, huge salaries, huge travel expenses and yet in my journey over the last 6 years of Autism I can’t find one family who yells from the mountain tops Autism Speaks helped me, they changed the life of my child.

So when you hear my adorable 10 year old say with a straight face, “Autism Speaks does not speak for the Primer’s, TACA does”. Please realize there is a reason, a very important reason they DO NOT SPEAK FOR US or anyone we know.

I post often on Facebook and on my blog on why I like certain Autism Charities, but the number one reason is I can find many families shouting from roof tops saying how this organization’s changed their child’s life. As for Autism Speaks and their $60 Million budget, I have yet to find one.

As always here are my favorite Charities for Autism, in no particular order, but have given me nothing physical, but have give me the ability to change my child’s life, gave my child camp, gave my child the ability to surf, lobbied for my child with Congress or just educated me along the way. I don’t need physical stuff, neither do the rest of my friends who are Autism parents, we want them, but what we need is tools, tools to make our kids lives better and for our kids to have a chance to be productive parts of society and not a burden on it. So please support the organizations that support us…

Talk About Curing Autism Now (TACA)
Surfer’s Healing
Autism Society of America, San Diego Chapter

National Autism Association's (NAA)
Autism Link
Safe Minds

(I am sure there are other’s I missed please feel free to remind me and I will add them, also)

I will close this with the next time some one asks you for a $1 to put your name on a little blue puzzle piece, please politely decline and then write their corporate offices and tell them Austin Primer prefers Autism Charities that actually help kids!! Until next time PITAup and do something to change the life of a child with Autism, the life you change maybe your own!!!

Saturday, June 19, 2010

Not Ready To Make Nice

The song “Not Ready To Make Nice”, by the Dixie Chicks was introduced to me at the Green Our Vaccine Campaign on June 4th, 2008. I am an avid Country listener and had never heard the song before, but that day I think it became my theme song! It expressed every emotion I had encountered since meeting Autism.

The lyrics say so much!! I know they are a political protest about W., but they so relate to the Autism fight.

“I’m not ready to make nice
I’m not ready to back down
I’m still mad as hell and
I don’t have time to go round and round and round”

These lines alone say so much, no matter where we go in this battle I don’t think I will back down. I can’t! There is this cute funny adorable child who has fought like hell for 6 years who counts on me!!! He knows I don’t have time to go round and round and round, but he knows I will!!!

“It’s too late to make it right
I probably wouldn’t if I could”

I can’t make it right; I can’t undo the damage vaccines have done to my child. All I can do now is fight for my child, and make sure no other child walks my child’s path!!

“I made my bed and I sleep like a baby
With no regrets and I don’t mind sayin’
It’s a sad sad story when a mother will teach her
Daughter that she ought to hate a perfect stranger
And how in the world can the words that I said
Send somebody so over the edge
That they’d write me a letter
Sayin’ that I better shut up and sing
Or my life will be over”

Let me tell you I do lie my head down every night and sleep like a baby, I know every night I fight for ever child I know with Autism.

The line “It’s a sad sad story when a mother will teach her
Daughter that she ought to hate a perfect stranger” so fits the situation and our life.

Honestly in May 2009 we were at Toys R Us and I asked about a blue reusable bag and they said I had to have donated to autism to get. So I started to say no thank you, because I knew the bag was for Autism Speaks and my 9 year old said really loudly, "Autism speaks does not speak for us TACA does!". I don’t think there was a prouder moment for me, so proud of Emily!! For those of you not familiar with Autism Speaks I have other blogs that “speak on this subject”.

I don’t want my other children who do not have Autism to hate but honestly the CDC, Vaccine companies and Autism Speaks make it hard. We have 1 in 91 kids with Autism and no one wants to look at any real causes or offer real help for families. When we started this journey 6 years ago it was 1 in 150, why does no one else worry about these numbers?

When polio was 1 in 3000 it was an epidemic for the love of god we are 1:91 and no one cares!!!

I am going to close this out with my favorite line of the song,
“I know you said
Can’t you just get over it
It turned my whole world around
And I kind of like it”

I don’t like how this turned my entire life around, but I will say I like how this journey made me a better person. It honestly turned my whole world around. It made me reevaluate what I was doing and why. I was always the person fighting something, but I became the person who had something to fight for. I have a love hate relation ship with Autism. I love all the great awesome things it has done for me. I love the better person I have come; I love the people I have been blessed to meet. I know I am a better person because of Autism, I am just a selfish PITA and some days wish it was not my child and wish someone else was fighting for my kid. Then again some days Autism ” turned my whole world around, And I kind of like it,” because I have found some of the best friends in life and I really and truly most days love my life Autism and all!!

No matter what life hands you PITA up and deal with it!!! Your children depend on you, especially those with Autism!!!

Not sure what song we are talking about? Here it is…

Not Ready To Make Nice

Tuesday, June 15, 2010

Diagnosis day


What do you do on the day of your child’s diagnosis? Is it a day of reflection, a day of tears (happy or sad) or is it just another day.

When Austin was diagnosed 6 years ago today, June 15, 2004, I never cried. Not once. I cried when a co worker of Ed’s child was diagnosed a year later, because I worried what she was walking into with our district.

I have cried over success and failure of friends children, but until this year I don’t think I have actually cried for me, for the Primer’s and for our losses and gains from Autism.

Some how I think this year is different. I have been weepy for the last few weeks. Not all the tears were sad and not all were happy. I have just been a mix of emotions lately. I do fear I have gone soft. SHHHH don’t tell anyone, it’s our little secret!!!!

I have cried every time I think about our Special Ed Director, Bruce Kramer, leaving Carlsbad Unified, I cry because I know what a difference he has made for Austin, and I cry because I worry about who is coming to replace him. Will it be like it was at the beginning where I had to fight for everything or will our district bring another Autism knowledgeable person in to continue Bruce’s work?

I have cried because an awesome warrior mom, Christina Martynec, who I met at the Green Our Vaccine Rally in June of 2008 and now know personally had her child undiagnosed a few weeks ago.
I have cried over Austin leaving parrell play and actually seeking kids out to play with. He may not always succeed, but he is trying. So thankful he has kids who want to help him be successful. Not just the kids at school, but kids like Paige and Julie. Tag seems to be a universal game every child can play even the non verbal ones!!!

Some how all these tears seem different then when I cried for Ed’s co worker all those years ago. Those tears were angry tears. These tears are tears for all the emotions I have felt over the last 6 years. They represent the ups and downs I have gone through. They represent my fears of the future and how I am unsure my kid will ever be recovered. They represent my thankfulness of how far we have come. They represent the things I know that I have changed and made better for the person who walks into Autism after me. They represent the things I know I still have to fight in the future.

Today not only do I reflect on my own child’s diagnosis, I reflect on those who came before me and paved the way for me and others like me. Thank you Lisa Ackerman, thank you Becky Estepp, thank you Katie Wright, thank you Dana’s view, thank you Karen L. DeFelice, thank you Dr. Wakefield, Dr. McCandless, thank you all DAN doctors who have stepped up and thank you all who I can’t mention who made a difference the for me and many others who follow us. I hope even if I change the world I live in, that I some day have the right to stand next you all, because you all changed the world for me, Austin and the entire Primer Family. We don’t have the recovered kid, but we have a completely different kid then we had 6 years ago today.

PITAup, you may not be able to change the world, but you have the ability to change the world you live in!! If it was not for someone like you, I would have had to gone home and done what our Kaiser, go home and don’t “thrive”, neurologist said and learned to live with Autism. Instead, I am today on our 6th anniversary of our Autism diagnosis, I get to reflect on the ups and down, but I know my life is better because of parents like me.

Thank you also to all that I call PITA, without you I could not get up every day and do what I do. You give me strength and courage to continue to fight. Love you all!!!

Thursday, April 15, 2010

Ever wonder what is a life changing event?


Ever wonder what is a life changing event? Ever wondering how many life changing events one person can have? I have…

For me they stand out pretty clearly. The first was having cancer, the second was having children, the third was having diagnoses of Autism and the fourth was having diagnoses of heart disease.

Ok that might be a bit deceiving because I have never had cancer, Autism or heart disease but I have lived through them all, and I am only 38!!! I have lived through my boyfriend, soon to be husband having cancer when I was 17, having kids at 18, my youngest child’s diagnoses of Autism and my husband having a heart attack when he was 39.

I always thought Autism would be the MOST life changing event, but I was wrong. The heart attack was. Surprise surprise.

The heart attack made me really think of how short life is. It made everything go into perspective; it made me realize I wanted to live. I guess that is what is different before kids and after kids, because cancer should have done that, right?

Nope.

As mom’s we are notorious for taking care of everyone but ourselves, and that becomes ten-fold after the diagnoses of Autism. I remember those first 9 months reading 40 hours a week on Autism. While most of you may think I live Autism now, trust me, this is the calm me. I know hard to believe, but free to ask Ed, Ashley & Nick. Before I get a 100 Facebook posts (since I know no one comments here, lol) yelling at me for not including Emily, I will point out it is different because she has only known a life with Autism, because Austin was like this since she was 3 and he was about 18 months.)

Ok back to the subject at hand, taking care of ourselves. You have to do it. You are not getting any younger, and the kids they are getting bigger and stronger every day. Eventually they will be able to out run us and you darn well better starve off that day as long as you can!!!

First let’s get rid of the excuse you are now yelling at the computer.

Excuse #1 taking time for me is SELFISH. I am pulling out the BS card on this one and telling no its not, it SELFLESS!! The better your health the easier it is on hubby and the kidlets!! The better you feel the better the household feels and runs.

Excuse #2 I don’t have the time, I work fulltime. Again I am pulling out the BS card you have the time. Every parent I know watches at least one 30 minute TV show a day, either give that up or exercise while you watch. If you work and you say you are too tired at the end of the day, again I say BS. You are entitled to two fifteen minute a day breaks and at least a 30 minute break for an 8 hour shift. Walk quickly for 10 of those 15 minutes and go to the bathroom in the other 5, and to make it more difficult take the walk up the stairs if you can. At lunch walk the other 10 minutes. Heck I just put “10 minutes of exercise 3 times a day” into Google and came up with 9 million hits.

Excuse # 3 I don’t have time I am a stay at home mom. When you pick your child up, pick up under the shoulders and lift once or twice and use the body resistance as a weight. Potty training? Use the door jam to do push ups off, run in place, etc.

Excuse # 4 I have some type of disability, war injury, stubbed my toe, etc. There are chair exercises and ways to adapt most exercise, be creative. Can’t think of any adaptations send me an e-mail or Facebook me and I will find one or ask around and find one.

Last and final BS excuse I won’t exercise. Fine then set down that Starbuck’s White Chocolate Frappuccino® Blended Crème at 760 calories and do some serious calorie counting. And don’t do it alone, invest in the bodybugg my best friend from high school does not exercise and has lost 45 pounds just by counting calories with the bodybugg telling her how many calories she burns everyday. You don’t have to give anything up, you just eat in moderation. Is it as good as eating wisely and exercising? No, but losing the weight and being in a healthy size will extend your life and make you more likely to exercise. I love mine. I lost 45 pounds and went from a size 16 to a size 6 in 9 months. I have also used the system to maintain that weight loss for over 7 months, and in those 7 months I have survived Halloween, Thanksgiving, Christmas, Valentine’s and Easter, are there holidays that you eat more then those?

Ok now when you see the price of the bodybugg, don’t come running to me to tell me it’s to expensive or I will write you a list of why you can afford it and how too;-) If you have a flex spending account let me know, I got Ed’s covered under ours.

Now go PITA up and get healthy!!!

(Updated March 24, 2013 because Bodybugg has changed their software and the new info is at http://bodymedia.extole.com/m/1270648960)

Wednesday, April 14, 2010

Why does the little blue puzzle piece and its organization not speak for me?


Why does the little blue puzzle piece and its organization not speak for me?

I get asked this question A LOT!!! Well today they do not Speak for me, because they take the money out of the pockets of great charities that actually help parents. My wonderful friend, Cindy Killeen Waeltermann, today is worried about her awesome little charity not making it because of “No money. Tired of making ends meet. Autism Speaks wins”.

An example of how Cindy’s charity helped me personally is that a few months ago when a fellow San Diego PITA asked for help for a friend that went to college with her, Cindy and her charity were the first to help out. Cindy personally sent me a message on how to get the child an evaluation ASAP. This is a mom, who started a charity because she wants to get kids services and her charity reflects that. When she posts on Facebook about “events” they are doing, many of those are events are kid related, not just about raising money. When was the last time the little blue puzzle piece threw a party for the kids with Autism? When did they do a conference to educate new parents with Autism? When did they sponsor a parent of a child with Autism to go to a conference? Honestly what have they done for me lately, oh wait they have not done a damn thing for me ever!!!!

Today, my older son Nick, who turns 18 in a few days and is realizing that he will have to go to a junior college because of lack of funds asked me what Autism Charity gave scholarships to siblings of children with Autism? I laughed and challenged him to get the little blue puzzle piece to do it, so I could stop bitching about them. Well hopefully his hopes are not high because I am sure that they will fail him just like they have failed his brother and his parents for the past 6 years. Instead of helping me or anyone I know they have instead used their money for a very fancy Park Avenue office and bad mouthed the daughter of the founder for believing in biomedical help for Autism.

So if you are still wondering why you should not donate to the little blue puzzle piece and their big fat NY offices, remember that of the $60 MILLION donated last year only $837,000 were donated to expand Autism services, so do the math less then 1/60 of their revenue, $341,000 went to expanding recreational services, but that does not mean any child actually saw a recreation service it means they were expanding them.

Yet they paid $1.3 Million on advertising, their chief science officer got $669.000, yes you read that correctly they got almost as much was used to “expand Autism Services” and twice as much as was used to “expand recreational services”
There are so many more stats that I could fill up the library of congress, ok maybe that is a bit far fetched, but I could at least fill up at least the Carlsbad Library with their wasted funds.

Here is a couple of awesome youtube videos on this subject if you want more info:
http://www.youtube.com/watch?v=8fc_qtWxMes
http://www.youtube.com/watch?v=6S-9yQrsras

So PITA up and help the little charities that help real families right now.

Here are a few of our favorite ones

www.firstgiving.com/austinprimer (Talk about curing autism now)
http://www.sd-autism.org/givingPrograms.html
www.surfershealing.com
https://ssl.charityweb.net/genrescue/ (Generation rescue)
www.autismlink.com
www.nationalautismassociation.org/

Tuesday, April 13, 2010

What’s for dinner?


What’s for dinner?

After almost 6 years on the Gluten Free Casein Free diet, I especially find it amusing hearing how hard the diet is and how someone could never do it. Sorry people it is not that hard. PITA UP!!!

When we started 6 years ago we ate bark, literally most thing tasted like bark!!!

Ok I should be forthcoming, the Primer household doesn’t all eat GFCF, but I am also not a short order cook. Had we only had Emily and Austin when we started the diet we would have all been, but we had a 12 and 10 year old who had a life before GFCF and before Autism. At that point in their lives we were so upside down we decided it was not fair to make them give up everything and trust me after meeting Autism we gave up everything, it might have been good for them to give this up too, but I would not ask it!!!

We did for an entire year though not have any commercial cereals and this was before EnviroKids had much more then Gorilla Munch. It was the one thing Ash and Nic used to leave down and one day I hit my limit and said, in the mom voice, “If you leave that down one more time, we will never have it again” and then for a year we did not. But trust me when their favorite bread was the next thing they left for Austin to eat got the threat, they did NOT leave it out. The learned they adapted!!

So for the record we all eat the same dinner and I make Austin his own “TV dinners” to take to school every day from the leftovers. I freeze them in wax paper and Ziploc baggies and they serve at school.

The diet is like any life change, i.e. exercise, moving, changing jobs, whatever, it is a mind set, once you realize that is just the way it is you get through it. Today’s GFCF people have it easy. I envy you all since we are now GFCFEFSFAF, for those newbie’s, those letters mean Gluten Free (no Wheat, rye, oats or barley), Casein Free (no milk), Egg free, Soy free and Apple free. For most things now days you can find tasty foods that are free of a lot, but generally they are either GFCFEF or GFCFSF, but you can’t be both. All you companies out there thinking what does the public want next, we want GFCFEFSF ;-)

OK so I have days where I have simply run out of ideas for what is for dinner. I figured others might also. So I thought I would share my new favorite GFCF recipe and that in a future blog I will share some of my other new favorite GFCF things.

Today I managed to make Emeril's Chicken Marsala. I subbed rice & potato flour for the wheat flour and ghee for the butter. It turned out fabulously and I am highly recommending the recipe!

Let’s put into perspective how well this was loved. The child who 6.5 years ago would eat no meat, veggies, fruits and definitely not a sauce with mushrooms in it, he ate it, and as I type is licking the plate, and before this when he was done eating his food he had seconds, and then moved on to his dad’s food!!!

That means we will be eating this at least once a week now!!!!!! YUM!!!

Oh and for those of you who say my kid is toooooooo picky for GFCFSF this is the same child that 6.5 years ago found a small piece of hot dog my sister tried to trick him into eating and he figured out how to get it out of the piece of Mac & cheese, without loosing his gluten filled opiate food and only spit out the hot dog!!! The more restrictive we have gone with the diet the better my child eats!!!

OK I will continue this subject in the future because I have some other fun and great new products to promote!!!

Until then PITA up and make the world a better place for our 1 in 91 kids with Autism.

Monday, April 12, 2010

”She should label that kid" and Tanya said, ”Yes like the book the Scarlet Letter or mark you with a capital I for idiot!”


Seriously, what are we getting for 60 million dollars? Does anyone know?

Because I am always being told that Autism Speaks at the very least (and I use that term loosely while my faces contorts into some gawd awful look) promotes Autism Awareness.

If we are getting Autism Awareness after all those walks and all that cash, I want to know why I’m up at 3:29 am pissed off that I again have to educate some ignorant Disneyland employee about Autism. $60 million is a lot of money, and we should have a whole hell of a lot of Awareness going on. No wonder most of us have to call it Autism Action Month, come on Autism Speaks send some money to California to educate Disneyland employees to not yell at children with Autism who are walking independently and staying with their big person, even though it was through the stroller exit and wasn't through your stupid turnstiles, the ignorant British woman who told me not to yell at the staff and “idiot” guy who wanted to put a label on my child. The worst part is I swear at least once a year I have to march into City Hall and give this lecture. When is Disney going to educate the entire staff, because I am tired of doing it myself? (OH and the quiet room will not being making me quiet, nope not this time, not ever when it comes to Autism Awareness and Action!!!)

Seriously the numbers are 1 in 91 we can’t be the first person with Autism that these 3 ignorant people have met, can we? OK maybe we can, but I am sure we will be the most memorable. Especially after I told the British lady that in this country children like mine had rights and laws to protect them while her husband sized up my husband and wondered if he could take us if he needed to. Sorry lady, I don’t care if you were a foot taller then me, my scrappy little American arse could have taken you and your husband out, and you do not mess with a mommy on mission to protect her child from ignorance!!!

Ok so here is the challenge of the day, if Autism Speaks, who doesn’t speak for the Primers and can’t make people “aware”, I guess it is up to all of us in Autism Action month to do it. So PITA Up and make the world a better place by taking some Action on Awareness today!!! (OH and Disneyland you can thank me later for not publishing your phone number at the end of this and asking my 521 Facebook friends to call you and complain too!!!)

Saturday, April 10, 2010

iPod Touch one of the best inventions EVER!!!


Wants the world to know how great the iPod touch is! Honestly it may be the best invention ever, at least for my household and a few of my friends’ households. It has even passed up the baby wipe and the Ziploc bag in my top two inventions ever, and you all know how much I love my iPhone, computer and internet. Funny thing is I should be blogging about http://proloquo2go.com/ which is awesome, and my friend Malinda would tell you it changed her life.

Malinda Cook says, “The proloquo2go program on the iTouch has changed my life as well as my non-verbal daughter! Since we started using the program in October 2009, she has been able to communicate her wants and needs much better. She uses the program at home as well as at school. I was able to customize it to her needs – proloque2go is so easy to use and program! I recommend it to anyone who needs a communication device for their child. There are 1000’s of icons that are not only up to date but familiar to children – no more stick figures. You can also download you own pictures easily. I highly recommend proloquo2go.”

We just got our proloquo2go.com in December and we are seeing nice progress in communication and we happen to think it’s great also. We especially love it since after 5 devices in 5 years we have one we can program our self and are not dependant on a speech teacher to do it. LOVE THAT!!!!

The part I never expected was games, or apps that can be downloaded on to an iTouch. As a wife of a video game addict and mother of 3 other children who also love to play video games, I love that Austin at 8.5 is now playing video games, even if they are just the toddler ones! I was often jealous of my fellow PITA’s who had kids that played video games and often wondered how much easier my life would be if my kid was a video game addict (how lazy does that sound? lol).

Well Thursday night I got that pleasure. We sat at quietly at That Pizza Place in Carlsbad, enjoyed adult conversation with out of town guests and Austin did not object. Ok he got up and tried to run a way a few times, but he sat and played for a long time. After 8.5 years of having Austin this was huge for us. Even my sister could not believe how well he did. If you haven’t thought about buying your kid an iTouch, I am highly recommending it and give it 2 thumbs way up!!!

Ok while thanking things that have us gotten here, I should include, we could not have done it with it out TACAnow.org, GFCFSFEFAF (ok it feels like a million things free), Houston Enzymes, Dana’s View, and all the wonderful PITA’s who showed me the way.

So as usual PITAup, and don’t be like my friend Nicole and think anything bad about up after the A. ;-)

Think of it like Cowboy up, lol. Change the world, be a PITA, and PITAUP!!!

Friday, April 9, 2010

Is there a difference between a Soccer Mom and a Football Mom?


Is there a difference between a Soccer Mom and a Football Mom?

According to my husband, the high school teacher and football coach, there must be. Since I lost 40 pounds and stopped wearing dumpy clothes, he keeps teasingly asking when I am heading to the soccer field or PTA meetings. Should I be offended? Luckily for him I am not. It feels good to have lost 40 pounds and to get to enjoy new clothes and have a new self confidence at almost 39 years old.

By now you are probably wondering what this has to do with Autism. Really it has nothing to do with it, but in reality it has everything to do with Autism. On June 15, 2004 my life changed when my youngest child was diagnosed with Autism. For the next 4 months, I read 40 hours a week on Autism, I was a one track mind “mom on a mission” (thanks Lin Wessell), and until November 8, 2008 I continued on the path to help my child and any other child I met on my way. On November 8, my world once again changed. My husband was admitted to the hospital and a few days later we were told he had a heart attack at 39.

Again you are probably wondering what this has to do with Autism. It has everything to do with Autism. We as parents, and especially us mom’s when we get the diagnoses we drop our lives and we do anything and everything Autism. One of the huge things we neglect is our health. November 8, 2008, I realized how short life is and how important health is. I made a point from that day forward to work on my health, partly for my health, but mostly for my 4 kids. I saw our family life pass before my eyes and realized that they needed one parent to live.

Luckily I have the best set of friend’s, my local mom’s night out group the PITA’s who were there to help me along the way. Victoria who recommended the bodybugg.com system, Amy who walked on what Ed refers to as our “death marches” with me everyday, and to all the others who cheered us on.

Now back to Autism, some of you may still be wondering what this has to do with Autism; it has everything to do with Autism. During Autism Action Month I want all the Autism Mom’s I know, all the PITA’s I know, to PITA up and start doing something for their own health. Stop thinking 30 minutes of exercise is selfish and start thinking it is “selfless”.

PITA up!!!

Thursday, April 8, 2010

Why is Temple Grandin different then the rest of the crowd?


Why is Temple Grandin different then the rest of the crowd?

Temple Grandin, Ph.D., is different from the rest of the crowd because she the most well-known and probably the most vocal adult with autism in the world. Like most parents with children with Autism her parents were told she should be institutionalized. Thankfully her parents like many parents I know did not listen to that and she is now a renowned author and works as a Professor of Animal Science at Colorado State University. Templin also is a well known speaker on both autism and cattle handling.

From Emergence: Labeled Autistic, Temple has said, "I have read enough to know that there are still many parents, and yes, professionals too, who believe that 'once autistic, always autistic.' This dictum has meant sad and sorry lives for many children diagnosed, as I was in early life, as autistic. To these people, it is incomprehensible that the characteristics of autism can be modified and controlled. However, I feel strongly that I am living proof that they can".

Despite the above quote the Autism News still titles their Feb. 2, 2010 article “Temple Grandin warns against ‘curing’ autism”. I personally do not read this quote as saying that, “I believe there’s a point where mild autistic traits are just normal human variation. Mild autism can give you a genius like Einstein. If you have severe autism, you could remain nonverbal. You don’t want people to be on the severe end of the spectrum. But if you got rid of all the autism genetics, you wouldn’t have science or art. All you would have is a bunch of social ‘yak yaks.’” (http://www.theautismnews.com/2010/02/02/temple-grandin-warns-against-curing-autism/

While a lot of high functioning people with Autism and Aspergers do object to “recovery” or “curing” a child with Autism, I believe Temple has PITA’ed up and said while she would not change herself she is not opposed to helping our kids who are not HFA“. For a parent of child who most consider low functioning, I think this is wonderful that she can see the difference. I wish others could too. I would never ever take away my child’s “normal human variation”, but I also do not want to leave him in the autism alone. Before diet and enzymes he colored and spinned 22 hours a day and thought of me as nothing more then the furniture. 6 years later he has a smile that lights up a room, and when he looks at you and smiles because he knows you it could melt even Frosty the snowman.

I hope someday he can be as accomplished as Temple, and tell his thoughts and opinions on the subject of Autism. Not only do I think Temple is pretty special so does TIME magazine, you can now vote in “The 2010 TIME 100 Poll for the leaders, artists, innovators and icons who you think merit spots on this year's list of the 100 most influential people in the world”

http://tiny.cc/fo4em

I hope everyone who thinks like me takes the time to vote, let’s show the world that some one with Autism can be the most influential person of the world.

As always PITAup and vote for Temple!!!

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Wednesday, April 7, 2010

The “Good Wife”

The “Good Wife”

So I am really loving the new show “The Good Wife”, funny as that sounds this leads me to think what is “The Good Wife”

Before kids or Autism it’s the wife that has no issue with her husband hanging with the guys for poker, football, baseball, soccer, etc. After Autism it’s the wife who no matter what still gives the husband some physical attention, even if it just a quickie. Fortunately for me, I was married almost 12 years before Autism, so I actually get this.

Trust me in marriage there are days and times you do not want to be intimate. And it is probably most days. Fortunately with marriage you also learn compromise; you learn that some days you have to give it up to make sure you have a happy household.

Ok sorry if this shocks you but it is true, it’s also even more true when you have a kid with Autism. Trust me by the time you are done with Autism on any given day you are ready for a nervous break down. You are sick of not understanding what your child needs, you are sick of diaherra or constipation, you are sick of tantrumming you are sick of not having a child like your friends, you are sick of being different and most important you are sick of having to explain it to your family, friends and possibly your husband.

This being said, I have a feminist PITA/friend who does not like a certain autism organization who says the same thing I do, but in my humble opinion you sometimes have to take one for the team, and for this conversation the team is the “family”. But bottom line a happy TEAM is a family that has a chance of staying together and if the stats of more then 75 % of families get divorces I am willing to piss off the feminists!!!

Even with that I am willing to state on the web, that a couple who does the deed is a family that stays together.

That being said, I remember being a mom, “in the weeds” of Autism. And by “in the weeds” I mean, so overwhelmed in the first 3 years of diagnoses. I remember reading 40 hours a week and when my husband came home overwhelming him with information he did not want. I remember also finding ourselves clinging to each other. Of course we had 12 years of marriage and 15 years of being together to cling onto. Most parents do not have that luxury. Which is why I highly encourage you new mom’s to go out there and “cling” to your husband even when you don’t feel like it. I promise you, if you are not in an abusive relationship and you have a relationship with your husband you will end up stronger and better off because of it.

As always just my opinion and as usual PITA up!!!

Tuesday, April 6, 2010

What is a PITA?


What is a PITA?

For most conversations as it relates to FB, a PITA is a member of our Mom’s Night Out Group for parents of children with Autism in San Diego County. We have now expanded out to Orange County and are looking for further expansions.

A PITA by definition is a Pain In The Ass parent.

Where does the term PITA come from?
I once heard a teacher refer to parents like me as a PITA and I thought to myself, why yes I am.

Generally this answer satisfies most, but for those who push further and want to know more, here is a more broad answer…

A PITA is a parent who pushes for her child and your child no matter what she is facing, we are not a biomedical group nor are we anti-biomedical. We take all parents, we take all care givers, and we take all that fight for our children with Autism to have better lives. We are change makers. We are what the school districts, government or pharmaceutical companies try to hide from other parents. We are parents who will not be coerced into taking less for our children. We are parents who want to help other parents learn the skills we have and to give back what has been given to us. We will not take the knowledge we know and walk quietly away once we have solved our children’s problems. We will take on the world for every child we know and love and find a solution for all our children.

I am sure I missed something, but pretty much if you fall under these guidelines, you are a PITA and welcome to start a PITA group near you!!! All we ask is that you stay within the above guidelines and that you take all parents of children with Autism and make the world a better place, and when asked where you got your name, you give credit back to the OP’s the Original PITA’s of San Diego!