S is for SORRY

The good thing is that we can always say the words, "I'm sorry" and start over again right? When things go south and everything seems wrong and all inside out, we can just hit the restart button by issuing a simple, "I'm sorry".

I had some sorry's to say yesterday and I feel better today because of it. There are many "I'm sorry's" said in this household....unfortunately. It goes with the territory of screaming meltdowns....and tempoer tantrums by both children and adults.

I am happy to report that we have started a new chore chart/reward chart thingy with the girls which is moving along so smoothly that there are just not enough o's in the word smooooth to describe it! Loving it so far and the girls really, really dig it.

Peace to all of you reading and let me just say that I am sorry for my last depressing post. I will try to keep up a more positive vibe if I can. Thanks to the love I received from my friends. I love you right back!

XOXOXOXOXOXOXO

R is for REALITY

The reality of autism, is that is just plain sucks. My life sucks. Our family life sucks. Autism sucks the life out of everything. I suck because of autism. I suck as a mom and wife. I suck as a daughter and a sister, a friend. I have nothing left to give to anyone...nothing.

This morning, I had a melt down and I ran away. I ended up in the Wal*Mart parking lot, alone and crying and shaking with the very sad realization that I have no one to turn to because of autism. I couldn't quite put my finger on it as to when or how it happened, but it has. I wanted so badly to reach out to someone and tell them I was hurting and yet I couldn't think of anyone to call. Who wants to listen to me whine and complain that my life isn't fair and I want a recount?

I mean I do have some family and do have friendships. But the sad truth is....is that I am so alienated from everyone because of autism. I have no one that I could pick up the phone and say I am hurting and they would know my pain. I don't let anyone in anymore. I have estranged myself from both my mom and my step-mom out of anger. I need them and they are off doing their own things right now. Sometimes a girl just needs her mom ya know? Both my dad and my step dad passed away years ago. I do have 2 brothers that have their own lives and their own set of problems and I don't feel that we are connected enough to me for either one of them to notice that I am drowning over here. I do have some friends that I once considered great friends, but I am so far away from them now too. I just feel different from everyone else and I just don't know where I fit in anymore. I feel so alone and on the outside looking in to all of their lives. I feel different.

I hate that my home is so discontent. I hate arguing with my husband every day...day in and day out. I hate the yelling and screaming and fighting and kicking and hitting and the door slamming that goes on every day inside my home with Ivy and now Jade too... it's loud and it's inside my head....inside my heart. I hate that we are falling apart more and more each day and that I can't fix it anymore. I hate that we spend so much money to make Ivy better and everything and everyone else suffers because of it. I hate that there is never enough money at the end of every month to pay the bills or for the extra fun stuff that you sometimes need to treat yourself to. I hate that month after month, I am robbing Peter to pay Paul and I am tired of being the juggler in the circus of my life. I hate my life. I hate that I can't say no to things I know I have no time for. I hate the stress. I hate it all.

The REALITY is, that a family with autism is not pretty. The REALITY is, that I want to run away and never come back some days (like today). The REALITY is, that no matter how much I pray for it, how much I wish for it, how much I try to do it differently...nothing will ever change the fact that AUTISM stole my child from me and then slowly like a cancer, it spread it's ugly ass disease into everyone else's life in this family until we all hate each other now. I know my husband hates me. I know my kids hate me. My kids hate each other too. It's just a big, fat, ugly vicious circle spewing out it's vile, nasty disease....never ending, always coming. It keeps on going until it has affected all of us and the stress is so bad and never ending that it shatters everything you had ever hoped for, it rips all your dreams apart and then mocks you and it keeps knocking you back down and hanging on like some weed...choking the life out of you. It grows on still hungry, still searching for more life to take from you until you have nothing left to give to anyone, even yourself.

That is the REALITY of my life. Pretty ain't it?

Q is for QUITTING

Which is what I have felt like doing sooooooo many times since we got Ivy's diagnosis 4 years ago. Sometimes you just want to curl up in a ball and hide from the world, down in your hole and just...QUIT. But every time I think about QUITTING, I hear that old saying play in my head..."winners never QUIT and QUITTERS never win". I have no idea where I heard that from growing up, but it has always, always stuck with me. So, therefore, I cannot allow myself to QUIT. I just have to breathe and move on.

I feel so sad for parents with children of autism. Most of them carry on a good front in public, but behind closed doors, they weep and they wonder how they make it through. Don't get me wrong, we parents of ASD kids DO NOT feel sorry for ourselves. We just feel like no matter what, it's never enough. It spills over in every area of your life. It's never enough for your ASD child, it's never enough for your neurotypical children, it's never enough for your husband, it's never enough for your family, it's never enough for your friends, it's never enough for yourself...EVER! It's the very thing that makes one want to QUIT.

Usually the thing that pulls me out of my hole, the thing that makes me want to keep on keeping on, is that fact that my child IS recovering. So, all the therapy, all the time spent waiting in Dr's' office's, all the dietary intervention, all the nutritional supplementing, all the the hoping, all the praying really does help. It allows me to continue forward and not QUIT. I suppose as long as there is breath left in me, I will never QUIT, never give up. I encourage all parents of ASD kids to never give up, never QUIT. No matter how bad it gets, there is always tomorrow, always another day to try again. Maybe tomorrow will be the day that you find just thing that will make your child betterand if you QUIT, then you will never know that. So, keep your head up, stay out of your hole and believe that your child is already healed!

Laughter really is the best medicine

When is the last time you laughed so hard you cried...or you felt like your sides were going to split? For me, it was LAST NIGHT. I met with a group of friends and we had some free entertainment last night. We literally laughed until we cried and was near to getting thrown out of O'Charley's I think. You can't take us anywhere, can you?

Well, I just wanted to write and tell you that if you haven't laughed lately, that maybe, just maybe, you need to do some of that and real soon!! I suggest an evening out with some very humorous people, but renting a good comedy would do too. Just do something that would make you laugh. You will feel better afterwards, I promise!

Today, life just doesn't seem so serious, so negative, so bogged down. It feels light and airy and I may just not do a dang thing the rest of the day other than post this new entry to my blog. :p

Here's to laughter...

Say it isn't so....

Summer can't be over already can it? I could just cry!!! I live for the summertime and the warm sunny days of summer vaction. Summer break wasn't so sunny for me this time around though.

Went to DC and then got back and had a little bit of a nervous break down I guess. Wasn't sure what I wanted to do with myself anymore. Should I stay married, keep working, move away, go back to college? All life changing and thought consuming thoughts for sure. The stress I have experienced this summer I do not wish even on my worst enemy by the way. It nearly broke my spirit. I have never been so low as I was the past few months. All the while planning a 25 yr class reunion, remodeling my home, getting ready for a visit from my mom and from friends from across the ocean in Germany, getting back to school supplies together and uniforms purchased, going back to work myself, etc. It was enough to break you right in two. I ended up in bed after 2 continuous months of doing nothing but going and going and going some more. That is how it always ends for me...sick in bed with recurrent mono type symptoms.

I had a visit from an angel though through the midst of it all. My dear friend Roswitha came to stay with me from Germany and seeing her, being with her, talking with her reminded me that once upon a time, I used to be someone. Someone other than Ed's wife or Jade and Ivy's mom. I was a someone that had hopes and dreams and traveled the world and lived life to the fullest. Where had that girl gone to I wonder as we sat one night on my patio listening to the hum of the chicada's in the trees outback? Where was she? Why could Roswitha see me, but I couldn't see myself in my own mirror? She gave me some good advice and that was to spend time with Lisa once a week and get to know myself again and to reflect on the things I want most out of life. I can see now that she is right. I have been depriving myself of a good life trying to save Ivy's. If I am not well, both mentally and spiritually, then how can I be of any good to my girls or my husband?

Autism is never going to go away in my house. It's here to stay like a big fat, red underground ZIT on your chin. You can cover it up with make-up, but you know it's still there and even though people don't say anything, THEY know it's there as well. So, the question is...how do you get around it since you know you have to just live with it? How do I find the balance in my life, in my marriage? In my time spent with the girls? How do I continue to love someone I am not sure if I can even stand some days? I have no clue really. I just keep trudging along and hoping that somehow, someway I will get it right for once. I keep praying for God to save me and that is all I can hope for in the end. I pray for saving grace.

I found that while speaking with my dear friend, the dark clouds began to dissipate and the sun came out again. We talked about the importance of eating a healthy diet, choosing the right foods, drinking lots of water, getting some exercise daily, etc. Things I already know...but somehow have gotten so far away from. I practiced her principals while she was here and by the end of her visit, not only was my spirit renewed, but I was a miraculous 9 pounds lighter too. I plan to keep up the work I have started and will see where I am this time next year. I am not dieting, but I am making life changes for myself instead.

I start school in about a month and can't wait to get back in the saddle again. By summer, I will be making plans to set up my nutrition consulting business. Things are really looking up indeed. I plan to travel ALONE to Germany next summer for a couple-three weeks. You heard me right, I am going ALONE. No husband, no children. It will be just the thing I need to jump start my new career. I am going to embark on a journey to find myself while I am over there too. We will see if I left her somewhere across the ocean, or if she has been with me all along after all.

Here are some pics of our summer happenings:

P is for POLITICS

And there has never been a more important election when it comes to making change. We said it Washington DC....A Change Is Gonna Come....so here are the candidates views on autism.

Barack Obama:

http://www.barackobama.com/issues/disabilities/
http://www.barackobama.com/pdf/AutismSpectrumDisorders.pdf

Supporting Americans Living with Autism Spectrum Disorders: More than one million Americans live with an autism spectrum disorder (ASD), a complex neurobiological condition that has a range of impacts on thinking, feeling, language, and the ability to relate to others. As diagnostic criteria broaden and awareness increases, more cases of ASD have been recognized across the country. Barack Obama believes we need to research treatments and search for the causes of ASD. He has been a strong supporter of more than $1 billion in federal funding for ASD research on the root causes and treatments. Obama believes we must work to guarantee that Americans with ASD can live independent and fully productive lives and to assure that their families understand and are able to support a loved one with ASD. Obama will fully fund the Individuals with Disabilities Education Act to ensure that no child with ASD or any other disability is left behind. Obama will also fight to assure that the government and our communities work together to provide a helping hand to people with ASD and their families.

Obama has a long record supporting people with ASD. In the state senate, Obama sponsored legislation that became law to create the ASD Program - a systems development initiative designed to promote the implementation of evidence-based practices. And in the U.S. Senate, Obama is also a cosponsor of a measure that would expand federal funding for life-long services for people with ASD, authorizing approximately $350 million in new federal funding for key programs related to treatments, interventions and services for both children and adults with ASD.

JOhn McCain:

“It’s indisputable that autism is on the rise among children,” Senator John McCain said while campaigning recently in Texas. “The question is, What’s causing it? And we go back and forth, and there’s strong evidence that indicates that it’s got to do with a preservative in vaccines.”

Combating Autism in America.
John McCain is very concerned about the rising incidence of autism among America's children and has continually supported research into its causes and treatment. He has heard countless stories about families' hardships obtaining a diagnosis for their children's autism and accessing quality medical treatment. He believes that federal research efforts should support broad approaches to understanding the factors that may play a role in the incidence of autism, including factors in our environment, for both prevention and treatment purposes.

John McCain was proud to lend his support to the Combating Autism Act of 2006, which he cosponsored, and worked to ensure its enactment. This law is helping to increase public awareness and screening of autism spectrum disorder, promote the use of evidence-based interventions, and create autism Centers of Excellence for Autism Spectrum Disorder Research and Epidemiology. John McCain understands that despite the federal and scientific research efforts to date, the exact causes of autism are not yet known and greater research is needed to understand this disorder. That is why in November 2007, he joined with Senator Lieberman in requesting the leadership of the Senate Health, Education, Labor and Pensions Committee, which has jurisdiction over federal research into autism, to hold a hearing on federal research efforts regarding factors affecting incidence and treatment in order to help determine where research efforts can best be directed. As President, John McCain will work to advance federal research into autism, promote early screening, and identify better treatment options, while providing support for children with autism so that they may reach their full potential.

As a parent,the hard part is trying to determine who is sincere and who is simply playing the autism card. Who is serious and who is really just a puppet on a string for big pharma? Who has the most ties to big pharma and who doesn't give a rats ass about my child or the 1 in 150 kids now suffering from autism in America? Who will save our children? Probably neither candidate would be my guess.

Stayed tuned for more digging up bones...and see the highlights of my summer next post.

O is for OPEN

As in wide OPEN spaces......being OPEN minded, one door closing and another one being left OPEN, or even OPEN like a book, kind of OPEN. I think my writer's block is over. I am OPEN and back in the saddle again. I have so much to say, but not right now.

I have had a lot to ponder this past month, but not a lot of time to myself. I have some good things happening and some not so good things happening. Can't wait to share them with you. Looking forward to hearing from you all. Thanks for all your well wishes while I was taking a small hiatus. Feels good to be back.

OH and one last thing...I am OPEN for comments too!