“By ‘alive,’ I don’t mean just ‘not dead,’

“By ‘alive,’ I don’t mean just ‘not dead,’ either. You’d think my mother would have been satisfied for me to live at home, tucked away from the world where she could protect me, but for her, that wasn’t living. She insisted that I be great.” Jonathan Morrow Author of

http://www.copyblogger.com/fight-for-your-ideas/

(I hope when your done reading you come back to read my thoughts on this blog and post your thoughts)

I really, really encourage you take a moment to read this link. It truly changed my life and I think you will want to share it with every parent of a child with a disability that you know!
I think sometimes we get so wrapped up in how the disability affects us that we forget how it affects our child and how our actions will effect the rest of their lives. The above blog was written by a disabled man whose doctors did not expect him to survive early infancy. In his blog he describes what his mother did for him and how it changed his life.

For me as a parent of a child with Autism, even before reading blog have always pushed my school district to the extreme for Austin. After the first year, Ed and I made our district move Austin to another district for appropriate services, when we finally returned to our district 3 years later we pushed for the program to change. Our child is the first non verbal child with Autism, who was not working at grade level, to be main streamed partial day in Kindergarten and 1st and succeed. I do believe the district did not think he would succeed, but he is. For me success is seeing the work you are doing at school or therapy, work its way into real life. For us what we wanted was socialization, for Austin to be able to make the connection with peers in and out of school. Can he go out and play on a playground today like a “normal” kid? No but his is trying, he waves to say hello and he tries to engage other kids we are getting there at almost 9.
This article always reminds me who I am fighting for. Since this blog is from the son's perspective of what his mother gave him, it puts things into perspective for me and what I need to do for Austin. Every time I read it is like the first time. It challenges me to go on and do what I need to do no matter how overwhelming it is, no matter how intimidating it is.

“When my elementary school principal decided that disabled children didn’t have a place in her school, my mom appealed to the school board and turned every board member’s life into a living hell for two years.

She won.”

How many PITA parents do you know that have stories just like this? I know a lot. I personally can’t wait to hear them all write a blog or tell their story just like Jonathan has on how we did something similar for them.

I know it Austin’s almost 9 years of life I have a few of these. My favorite is sitting at an IEP meeting and asking for Vision Therapy and at entire school district team and by team I mean two school districts looking at Ed and I and having the audacity to say something to the point of Austin will not like this type of therapy. Being me I responded with a smart arse response of, “I do not chose things for my children by what they like, otherwise my older children would be out smoking pot and drinking alcohol”. The room was quite and Austin got Vision therapy, which is in it self another blog and an amazing therapy!!!!!

So today my challenge for you is to book mark Jonathan Morrow’s Blog and when you feel discouraged and that there is no hope, pull it out and read it.

Remind yourself of how you want your child to tell the story of what you did for him or her. Honestly the only people our kids have that they can depend on is us. So go out and PITAup, change the life of a child with Autism, the life you change, just might just be your own!!!

*Please note any links that are in green and underlined twice are being linked by the blog, and are not being linked by me and do not represent anything I am promoting.*

Emotional Vampires

Do you have some one in your life that is just so negative that they are pretty much an emotional vampire? I have a couple in real life and few who are Facebook friends most who have children with Autism. Some days, most days, I think about defacing them, I mean unfriending them. Honestly, I get tired of the whole life sucks, autism sucks, they have nothing positive to say about their child/children, Jenny McCarthy sucks, DAN doctors are snake oil salesmen, vaccines suck, etc.

YES WE KNOW AUTISM SUCKS!!!

HEY!!! It could always be worse. Many of my friends with kids with Autism that are dealing with that and a whole bunch more, they would be thankful to only have Autism to complain about.. Here are a few examples off the top of my head.
1) CPS.
2) Fighting cancer
3) husband’s has passed away in the past year
4) many with chronic immune issues
5) chronic pain
6) heart issues
7) domestic violence
8) drug abuse
Most of the friends I have with the above issues complain but not 24/7, and they do post some positive things when they have a good day.

I seriously worry about people who can’t find something good to post about once in awhile. I’m not looking for huge things; the something good could be that your child with Autism smiled at you, the sun came out, or you caught all the green lights on your way home. Any happy thing here would make me feel better.

This may sound like I am dissing one of my fellow autism parents’ but I am not trying too. If I was I would have already defaced them and moved on. I just want to feed them some food for thought. I think most of us on Facebook and have a child with autism are Autism Awareness 24/7 but I fear the always negative message may scare off the people in your lives who do not live and breath Autism 24/7. I also fear it will scare the new parents to autism from trying some of the interventions that have helped other kids. 6 years ago I was a lot like my emotional vampires friends, well except I am pro Jenny and DAN. Then I realized that I was sounding like a crazy person and alienating those I wanted to help. I then took a step back and changed the way I worded things. I gained a lot more supporters and people who do not have a child with Autism, but know someone who does and may need the information I have learned.

A great example of this is my Cousin Renee’s aunt friended me the other day. I’ve know this aunt all my life, she is like an aunt to me. She friended me a year and half after she heard me talking to Renee’s cousin April about why she should not use Dreft on her baby’s clothes. Renee’s aunt is becoming a grandma and she heard me talking to April at Renee’s daughter in law’s baby shower, trust me I wanted to yell full force to April to not vaccinate, but I didn’t. I did not because I knew I would send April the other way. Instead I talked to her about something small, because I DO NOT scare pregnant women. I want pregnant women to feel free to have an open dialogue with me at anytime. My calm attitude when speaking to April, left the door open for someone who was listening to talk to me about their concerns 1 ½ years after the initial conversation.

This same dialogue with April also lead me to friending and talking to another one of Renee’s cousin’s wives. Her child has been extremely sick and was recently diagnosed with multiple food allergies, and needed help with finding foods her child could eat and my thoughts on eating GF at home for the entire family. Had I stayed the crazy person both these people may not have learned the knowledge I had to share.

I guess the point of this blog is to:
a) Think before you speak, don’t scare off the people who want to listen to you
b) Remember you may not be able to change the entire world at once, but you can try to change the world one person at a time
c) Most important don’t be an emotional vampire, let your friends know something positive every once in a while other wise we will worry about you!!!

PITA up, you know you want too!!

Gluten Free

Every where I turn lately there are articles lately on how women should be gluten free. Gluten is a protein found in many grains, such as wheat, rye, barley, spelt, kamut, and triticale. Gluten is often associated with oats due to wheat and oats being grown on the same fields. According to a 2008, USA Today article, “In 2003, just 40,000 Americans had been diagnosed with celiac disease; today, it's 110,000 — and, if everyone with the disease were diagnosed, it would be 3 million, says Alessio Fasano, medical director of the University of Maryland Center for Celiac Research in Baltimore”.

I am thinking about going Gluten Free myself and have a friend that is trying it right now.

Which leads me back to my new favorite things…

Imagine Natural Creations Creamy Portobello Mushroom Soup is absolutely amazing.
At Christmas & Easter I used it to recreate French’s Green Bean Casserole minus the French Fried Onions. If anyone has found Gluten free Casein Free fried onions please send it my way.
I am going to using the soup to try and recreate the Coke Pot Roast Recipe, well I will if I can find a high corn fructose syrup free cola (oh and do not suggest Pepsi Natural because it has Apple Juice in it).

My most favorite item I have found recently is something my child can’t have, because he can not have eggs, but it is by far my most favorite thing I have ever tasted that was Gluten free Honestly if I can find a good tasting Gluten free beer I will be Gluten free immediately, because I think I could do it with this product and beer and that says a lot!!!

Udi’s Gluten free Foods White Sandwich bread tastes wonderful, it is also casein free, soy free, and nut free. It is soft and flavorful; to me it tastes like Italian bread. I am eating it right now will oil and vinegar like you would at an Italian restaurant. It is simply divine and only 140 calories for 2 slices!!! I can’t wait to try their whole grain bread, muffins, pizza crusts, and granola.

If you the readers have any new gluten free products to suggest please send them my way.

Until next time PITA up and have a great Monday evening.

Hope

When you have a child with autism the littlest things can become the most amazing things. Yesterdays amazing event was Austin made himself a sandwich. May not sound like much to most, but as a parent of a child with Autism it means hope! Hope that some day Austin will be able to live on his own and make his own dinner.

Hope is a wonderful thing. I sometimes think sometimes people forget how important it to keep the hope and faith alive. When you get the diagnose there are a lot of people out there, especially the medical community who will tell you to go home and learn to deal with it, because this is the rest of your life. For me that statement was given to us by a neurologist. My first thought was a curse word and “no this is not my life”. I am so glad I had that thought because my life is so much better today because of my attitude.

Ok, I am not going to lie to you Autism is far from fun. It has some really bad days. Like one day last summer where I woke up and Austin had dropped all of the food out of the pantry and the fridge and pretty much ruined about $500 worth of food. Or the days where he cries for no reason and I can’t figure out where he hurts or what is wrong. All those poop smears we have cleaned over the years. I could go on and on about those not so fun days!!!

Then there are those exceptional days like yesterday he made the sandwich, the day continued to get better. We went to a friend’s house for dinner and there he actually played with a toy appropriately. Ok it might have helped that it was a little claw game that had nerds in it and he really wanted the candy, but I’ll take it. He also played with his iTouch and watched TV with the other kids and we got to enjoy the other adults company. It’s nice to be able to enjoy a normal family day.

Austin amazes me everyday, not just because he can make a sandwich, but because we didn’t listen to that neurologist. If we had, my beautiful, amazing young son would not be where he is today. Each day he amazes me with the “little” things he does. Most would not even notice these small accomplishments, but I certainly do! The hope for the future is so bright for him it’s nearly blinding for me and all who support our family.

I hope through this blog that I can spread some hope to parents who are new to the diagnoses and to let them know things do get better you just have to keep and open mind look for the opportunities this journey will bring you.

Here’s to hoping today and tomorrow are as amazing as yesterday.

PITA up and do something to show someone around you a little hope.

”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!!!)

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!!!

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!!!

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!!!

If you like my blogs please become a follower and leave a comment.

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!!!

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!