Trangressions

I can't tell you how many times I have thought of this blog and the people who used to read it and support me. I would like to thank each and every one of you for the support and love you have shown me over the years in this journey of autism. I have to say that I am quite sure I haven't thanked you enough. In fact, I may have never thanked you at all, but if you are still there, I thank you. By now, I have probably lost all my readers except for a few, so I may never really know if anyone is still reading, but if you are, I would appreciate you letting me know in the form of a reply at the end of this post.

I would have to say there is probably nothing worse than reading someones story (aka mine) and watching it unfold and knowing the outcome isn't going to be good. Kind of like watching that train wreck of a show that TLC is airing right now, called, Breaking Amish. You just know it's not going to end well. That's the story of my life to date. You the reader, have followed me along and watched it all unroll and unravel like it always does, until it spun around a few crazy times and sputtered, choked and coughed, then finally died. Oh, I tried to revive it once or twice. Said I cared about it, and pretended to be concerned by performing bloggers CPR on it. Said I would vow to update and let you know what was going on. Truth is, I really must not have cared too much. Truth is, I was just tired of autism and everything that goes along with it and I didn't want to share and feel so vulnerable anymore. Truth is, I had lost my way and the only person who was going to rescue me, was in fact ME.

So here I am before you, admitting to God and to others, that I have greatly done a disservice to myself, to my kids, to my marriage and to my readers who once believed in me. Autism has a way of robbing you of all that you love sometimes. And even though I put up a really good fight, in the end, I let it win. I let it beat me and I let it beat us. For a smart girl, I can make some really, really dumb decisions sometimes. Here lies the problem, I am a fixer. Oh, how I love to fix people. It's like I make it my full time job. If you are broken, I want to be with you. If you are broken, then please let me help you and I promise I will fix you all up. The thought almost makes me smy (that's smiling and crying at the same time). My need to fix situations and people is what ALWAYS gets me in trouble. Problem is, I can spend all this wasted energy trying to fix other people, but I sell myself short by never stopping to fix myself. I always come around sometime after the fact and realize what I have done (just like now), but then I seem to somehow inevitably do the exact same thing again in the next go round. Never seeming to learn from the last debacle that this is not how life works. Seems to me that Einstein quoted the definition of insanity as doing the same thing over and over again and expecting different results. I should really tape that quote to my forehead.

In one respect, it's probably a good thing that God chose me to be Ivy's mom. Because He knew how hard I would fight to fix her. He knew that I would be diligent and work tirelessly to find a cure for her or for a better way. He knew I would leave no stones unturned and that I would not be willing to take no for an answer. He knew I would never back down until she was fixed or better. He knew I was a warrior when I needed to be and for that I thank Him with my whole heart. I thank Him for believing in me so much, that He thought I could bear this cross for her. But, on the other hand, I feel like I let everyone down. I feel the shoes were too big for me to fill, like the order was too tall, like I.. I  just feel really tiny.

So what's next you ask? Well it's seems like a good time to give myself a swift kick in the backside and get back to doing what I do best, and that's sharing my story. I have been inspired recently by an unnamed source, but it was enough to get my wheels spinning again. I have a lot of amends to make and there is no time like the present to get started. I pray I won't let you all down this time. Keep the faith.

WANTED!! My Life BEFORE Autism

Whew! I just had another ephiphany. I was sorting through old pictures of my girls while working on a Christmas project when an overwhelming wave of emotion just knocked me over. I mean the kind of emotion where you instantly start crying your eyes out. I just realized how much I miss my old life. I know I left it right here somewhere, but I can't seem to find it anywhere. I miss my kids being little. I miss the laugher and giggles. I miss the rhythm of our daily routines. I miss my old happy home. I miss what used to be our family. There I said it...AND out loud too. I miss it. I miss it real bad.

I just asked for God's forgiveness the other day on this whole issue, so I should have known this was coming. All it needed was for someone to pull the trigger. The pictures...all of them from birth to present was all it took to kick it off. I got to the pictures from Washington DC when we went there to fight for what we believed in on autism and those are the ones that opened the flood gates. DAMN YOU AUTISM!!! Is there ANYTHING at all you haven't taken from me? She was diagnosed in April of 2004. Fast forward to December 2011. It's been almost 8 years since I first heard your name: autism, autism....AUTISM!! After 8 years of battling you, I am tired, worn out, aged 10 years faster then I should have and I have lost my marriage, lost my family, lost my self-worth, everything to you. I hate you. Nuff said.

Tuesday's Thoughts

I was thinking today about many things, but it occurred to me that I try really hard to NOT think about autism. How exactly have I mastered that? I don't even want to hear the word AUTISM in my vocabulary. Autism has drained the life out of me. I feel all used up and dried up like a raisin. I don't have any words of wisdom to offer anyone these days. I just pretend I don't know anything about it. I wonder how many other autism moms are with me in this boat?

After all, I pretty much devoted 5 solid years to learning, reading, researching, advocating, campaigning, championing, educating and silently suffering over autism. What's left? When it all comes down to it, no one is really listening. People listen, but then don't make the changes necessary in order for their kids to be safe out of convenience for themselves. Have I even made a difference to ONE person in this world? Did I really change anything? Does anyone even care that my child is vaccine damaged and was blessed with autism as a result of it? I am just tired. I have ran out of gas. Nothing really matters to me. I've lost my game, lost my drive, lost my passion for sharing our story. St.Theresa, as the song goes, I have abandoned you. I've jumped ship, flew the coop, went over the hill and I am left wandering around the wilderness trying to find a way back home to the comfort and familiarity of things that I love and am passionate about. How does one find their way home? Seeking advice...

Notice above that I said Ivy was blessed with autism? I do see it as a blessing. For without that fateful diagnosis, I wouldn't know HALF or even THREE QUARTERS of the stuff I know now. I am just so grateful for the knowledge I have gained in my research and discovery during the past seven years. It's been a blessing to meet and know all of those wonderful people out there who share my journey with me every day. It opened my eyes widely to the corruption going on in America. I learned that our very own government along with the drug pharmaceutical companies would go to great and illegal lengths to hide studies and documentations to give the American public a false sense of the truth. I have learned that my country and most of the people in it do not care that my child was harmed as a result of the trust I placed in the vaccine program. I have learned that your body is a temple for sure and if you flood it with toxins and chemicals laced in our foods and drink, that we as a people become very sick and can't function to the best of our ability. I have learned that by reducing the exposure of chemicals, hormones, antibiotics and pesticides in the foods I give my kids that I am keeping them healthy and not placing them into a place of premature puberty where their bodies don't belong with their minds. I have learned to not misuse an antibiotic and let our bodies build up their own antibodies and immunity on it's own so that when we get sick, we can Heal Thyself. I have learned that opinions are like noses...everyone's got one AND just because I whole heartedly believe my child was vaccine damaged, there are millions of people who don't buy into the theory that it could be possible for vaccines to cause autism...and while I respectfully would agree to disagree on that point, you won't find me calling those people who do not share my point of view, uneducated or stupid. I would however say that I feel sorry for them that they were unable to open their mind to the possibility. I often find that those who have resisted me the most and made the most horrific comments to me about how irresponsible I am for having spread such ugly lies about vaccines...are the very ones who end up down the road with a child that has "issues" and seek me out for advice. I don't look at those people and say, "I told you so"...I say, "welcome to the club, sit down and pull up a seat and let's get started, what can I do for you?"

Most of all I have learned how to open my heart to people I don't even know, to share in their sorrow and joy and triumphs as we walk this road together. I don't know where I belong anymore in the autism world and I don't know where I am going to, but I sure know where I have been. <3

Heartbreaker

Well anyone that has a child with autism surely knows that with autism, comes heartache. That's a given. Someone pointed out to me last night that all kids suffer heartache, not just kids with autism. Very true. All kids have been on the receiving end a time or two of someone's bullying. As a parent, you want to protect them from that type of pain, but yet you have to let them learn to fend for themselves because at times, life just isn't fair and they need to learn coping skills for when that happens. For the most part, I let Ivy fight her own battles, only once have I stepped in and shown my claws since she started school. She is an easy target for kids to pick on because she is not only speech delayed, but she is socially delayed as well. She is in the 3rd grade, yet relates best to the kids in kindergarten and 1st grade. That's where she is as far as maturity level, so that's where she best fits in. Nothing wrong with that, except that her typical peers seem to like to call her names like baby and preschooler and the likes.

Which brings me to my point here....last night Ivy had a meltdown. The kind that breaks your heart kind of meltdown. It's amazing to me the things she remembers. She started crying first that she remembered when she was a baby and she was angry and used to slap me and pull my hairand she was sorry for that. I was sort of dumbfounded. I can't believe she really remembers that. She has never expressed to me that she remembers anything about her earlier years, so how was I to know? That thought sent chills down my spine though. If she remembers doing that at age 2, 3, 4, then kids with autism are indeed locked inside just waiting to get out. That's so scary. So she knew all along what she was doing but couldn't control it. That thought is just really, really sad to me. :(

Then that went straight into a course of "no one likes me at school" tirades...that "everyone thinks she is a baby" and "she doesn't have any real friends" and that "the girls in her class don't like her"...which sent her straight into the "I HATE AUTISM AND I DON'T WANT AUTISM ANYMORE, I DON'T WANT TO HAVE TO TAKE ENZYMES AND EAT SPECIAL FOOD, I JUST WANT TO BE NORMAL LIKE ALL THE OTHER KIDS!!!!" tirade. Which left me speechless. And sad. I don't want her to have autism anymore either. I don't want her to have to take meds and supplements and enzymes and eat special food either. I don't want her to be picked on at school and singled out either. All I could do was hold her and rock her and assure her that she was ok and she was a very special person even with her autism. What else can you do? Food for thought though as I make my way through today: Ivy remembers being locked inside....wow, that's amazing!

Wondering

I wonder if I were to quit blogging about autism, if I'd have anything to say? I wonder if I blogged about my sad, little, lonely life would anyone want to read that? Probably not. Although I love the people who can blog about being a mom, easy meal preparation, fancy photography, home decorating and thrifty shopping techniques....I just don't think that I am that kind of blogger. Afterall, I am not just any Lisa and not just any blogger and this is not just any blog, right?

What if I blogged about something entirely new and different? Is blogging still popular or is it losing it's edge? With the millions upon millions of blogs out there, is my blog even significant? Should I stop blogging altogether? Do I have anything interesting enough to share anymore?

These are all the questions that I think of whenever I click my saved link that leads me to my blog. Everytime I go to update it, I keep thinking that this blog has served it purpose and there is nothing left to give my followers. Maybe I have just outgrown it? Maybe there is just nothing left to say about autism that hasn't already been said by thousands of other people blogging about the exact same thing!
Unfortunately, autism is main stream now. It's everywhere you look. Some one has a sad story about the atrocities of autism and how it stole their loved one away from them. That's the bitch about this whole thing. It's just another day in paradise for those of us struggling with our 1 in 150 kids. That's a helluva lot of kids. So there are now a helluva lot of people out there with the same damn, tired old story that I have. Telling my story of autism is kinda like beating a dead horse.

SO...unless I can come up with some reason to keep this blog going, I think I am just going to give it up. I have chronicled our journey online for the past 5 yrs. Maybe it's time for me to step down off my soap box and hand the mike over to some other mom who has a child that has recently been diagnosed....let her tell you her story? I don't know...just sorta thinking out loud here. If you should happen to read this post, please leave a comment and gimme your thoughts!

Let's reflect for a minute

You know, when I'm stuck and not sure which way to go, I always like to reflect on the past to see exactly how far I have come and see if that helps push me a little further down the road. Reflecting on the past is to think, ponder, or meditate on life's events that lead up to the here and now. It keeps you grounded and humble and let's you see how life always has a way of working itself out for the best.

I was thinking yesterday about Ivy and how far she has come since being diagnosed at age three with autism. I remember that day clearly, like it was yesterday. The lady said to me, "well yeah Ivy is on the autism spectrum and there is no cure for autism and here is some paperwork about autism you might wanna read, any questions?" She plopped a whole pile of paperwork in my hands and I walked out the door just numb. I wasn't sure I was going to make it across the parking lot to my car without buckling under. I remember talking to God as soon as I got in my car and saying, "please show me what to do".

The very next morning, I got on Google and typed in the words "cure for autism"...the first thing that came up was info on THE GFCF Diet and how people were bringing their kids out of autism by doing this diet. I was hopeful that this was my answer. That morning I sat and read for hours about how I could help my daughter. It was the beginning to my road map to recovery. I knew I had to save her no matter the cost. I would stop at nothing to get her better. I would leave no stones unturned. I would try everything there was to try and start from scratch if need be. I only had a small window of opportunity to pull her out of it and I was in a race against time.

Reflecting back, I was truly a mad woman. I was obsessed and addicted to healing her. It cost me a lot in the end. I am completely broke and don't have a dime to my name, I lost friendships over it, lost family connections, and even my marriage didn't survive it. But would I change a thing about the journey? HELL NO! I would do exactly the same thing all over again if it meant saving my kid. I don't regret a single moment of the hell we've lived for the last five years. Because it was all worth it to see her beautiful face light up when you walk into the room and it's worth it when she masters something new each day. It's worth it when I see her forming friendships and maturing more each year. It's worth it when I see her excel in school and become one of the top students in her class. It's worth it when I see her playing with her sister without screaming and throwing a tantrum. It's all worth it.
So no regrets here, only gratitude today.

Shoulda, Coulda, Woulda

A friend recently sent me a note and said if I wanted to get re-inspired to write, I should go back over my blog and get inspiration from that. At first thought, it sounded like an excellent idea (and it is) but after mulling over it for a week or more I decided that I am afraid to do that. I am afraid of what I might see. I am afraid that I won't LIKE what I see is probably more like it. It's not that I can't embrace my past, it's that I am at this crossroad in my life where I have one foot in the past and one in the future and I am paralyzed with the thought of going back. I don't want to relive those times, those heartaches, those disappointments.

Yesterday I sort of had an epiphany. I love it when I have one of those, because it usually means healing is coming close behind it. I was watching a show on TV about addiction and one parents struggle to save his son from addiction. At one point the father said, "I realized that I too, was addicted. I was addicted to saving my son". That hit me like a ton of bricks and the light bulb clicked on. I already know and accept that I have addiction problems and struggle with an addictive personality, but hearing that really drove it home for me. That is the life I have been living for the past 5 years. I was addicted to saving Ivy from the throws of autism. I was obsessed with saving her. Looking back now it's so simple to see. I traded one addiction for another. Now is the time when I could really get caught up in the shoulda, coulda, woulda's of life.

There are certainly things I could of done better, like reaching out more to friends and family and not trying to be such a martyr when it came to Ivy's recovery. There are certainly things I should have done but didn't, like asking for help when I was drowning in my own personal sea of sorrow and shutting Ed out because I wanted to crawl in a hole and die some days. Then there are certainly things I would have done if I had only had the resources to do so. But I let resentments and hatred blind me and not allow for things to flow into my life that might have if I hadn't been so closed off to it. I have learned from the mistakes and I am suddenly aware that it has been an addiction for me and I also know that like all other addictions, I am going to have to let this go and turn it over to God.

Life is really going to be ok now. Ivy is healing more and more every day and that in itself is a true miracle. I guess I can't really say that I regret that I was obsessed and addicted to saving her, because ultimately, I believe it is why she is where she is today. My drive and determination is what pulled her out of the darkness and back into the light. For once I can be grateful for my addictive personality! So rather than sit here and dwell on the what-if's, I think I will just embrace my faults and the fact that the past is the past and my life is going exactly where I want it to go right now.

You can't SEE Autism!

I wish I could make a sign to carry around with us wherever we go out and hang it around Ivy's neck or something. I get so discouraged sometimes because people just think because she is cute, there is nothing *wrong* with her. She walks around upright and appears to be able to communicate, so she must be *ok*. Well, very often, autism can't be seen. Let me repeat that, you can't see autism, ok?

Conversation with a friend (and fellow musician to my husband) this weekend:

I tell him we are organizing a fundraiser this January and we'd like for him to play in it if he could donate his time. I then proceed to tell him about our idea to have several bands and provide entertainment for a cover charge. He looks at me and says, who is the fundraiser for? And I say Ivy...for her treatments, to help ease the burden on us. He looks at her and then says, "well she seems like she is fine to me. What's wrong with her anyway?" I have told this friend before that she has autism and I know my husband has too. I am just in awe because you can't see her physical disability, that people assume she is normal. That really irritates me. It just goes to show you how uninformed the general public is about autism.

It hurts me deeply that this guy thinks there is nothing wrong with my child. Then I felt the need to explain how she is only as good as she is because we have both cashed in our 401k's, took out a second mortgage and spent well over $150,000 in treatments, medication, supplies and special food to accommodate her special diet. We drive old beat up cars and live in a dump because we spend every extra penny we have getting her better. Why should I have to explain that to people to justify our reasons for having the fundraiser? So now it makes me feel all self conscious that maybe others will perceive Ivy in the same light and maybe people will not want to come to our fundraiser or feel like donating is stupid.

I could really let this tie me up in knots, but I am looking forward to Thanksgiving too much to let it ruin my Holiday. Take it way God, I can't handle this right now.

An Idea is Born.....

When we were getting prepared to travel to Washington DC for the Green Our Vaccines Rally, we were asking ourselves, how would we get there and many people pitched in and got us there. It's amazing to see God work through others to do what we couldn't do for ourselves.

That is when the idea of a fundraiser was born. We have a fundraiser in the works for Ivy. The proceeds will go DIRECTLY towards some new and promising treatments that are now available. I am no longer going to dwell on the fact that we could have built and paid for an entire house and probably a couple of cars as well with the money we have used to recover her. When I wonder why I am still living in my dump of a house and why I am still driving a van from 1997, I only have to look as far as Ivy's bedroom door to know that it was all worth it to save her. The problem we face now, is that we are just plain tired and can hardly keep afloat. We are now going to put our Trust in God that He is going to provide us with the funds to keep getting Ivy better. One day we can look back and say she USED to have autism, but she is now HEALED from it.

So, we are working on the fundraiser and leaping in faith that this will provide enough to get us started on the homeopathy and some other new treatments like HBOT. I will keep you informed on the progress. For right now, I can tell you there will be lots of music involved. Some of our friends that play in bands have stepped forward to play for free and there will most likely be food involved and you will buy a ticket to get in and there will be raffles and 50/50 tickets to be sold as well.

Now all I have to do is get some cool prizes for the raffle donated and work out the food details and we are in business. The event will be held sometimes in January '09. Wish us luck!!

T is for.........

TIME: this is something I never seem to have enough of. I mean literally...after the diagnosis of autism, time became a precious commodity in my life. I never, ever have enough TIME. Autism is a robber of TIME. Somedays, I just wish I could hang out with Jade and give her my full, 100% undivided attention and not feel guilty that someone else is not getting a piece of me too. But that NEVER happens when you have lost your TIME.

THANKFULNESS: I am so thankful for the friends and family that continue to rally around us even when we are so obviously failing you as a son, daughter, sister, brother, aunt, uncle or friend. Please know that we always have you all in our hearts and it's your love that carries us through one more day when we are at our worst and want to totally give up.

THERAPY: All families that have kids with an autism diagnosis should be offered FREE therapy. I have never been a therapy kind of person. But man, could I ever use some about right now. I am pretty much at the end of my rope most days and my marriage is failing miserably as well. I just read that the divorce rates in autism families is 8out of 10 ending in divorce. That's is pretty darn high and I completely understand where that number comes from. Sometimes I feel like adding to the number to make it 9out of ten.

TREATMENTS: There are so many new and promising TREATMENTS out there to treat ASD kids....problem is, no one can afford them unless they mortgage off their homes, cash in their 401K's, sell their kidney on eBay or beg, borrow and steal in order to pay for it. I have no money left to pay for anything. I worry that Ivy's window of opportunity is slowly closing and this is as good as it gets for her. How do I convince the window to stay open a little longer for me until I figure something out? I imagine me talking to the window like this "Hello, window? It's me Lisa. Please stay open long enough for me to figure out how to handle this money crisis, ok?"

TEACHING: Every day I am alive and lucky enough to be Ivy's mom, I learn something new from her. She is a TEACHER. She is TEACHING me patience, tolerance and unconditional love. She is TEACHING me to love myself even when I can't or don't want to. She is TEACHING the world that our Earth has become toxic and we are getting sick as a people and we need to clean our planet up and remove the toxins so our kids can become healthy once again. She is TEACHING her peers to have empathy and tolerance for special needs kids. She is TEACHING her sister that even though she is hard to love, its ok to love her from afar, and Jade does a wonderful job at that.

THE END: I have decided to end the autism alphabet early. I no longer want to focus on the negative aspects of autism which is what the autism alphabet has allowed me to do. It was therapeutic and good while it lasted, but I only want to focus on the positive from here on out.

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!

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!

N is for NOTHING

Which is pretty much what I feel right now. NOTHING. I have had nothing to inspire me to do any blogging what-so-ever. I have such a flurry of activity going on in my personal life right now that it leaves no time for writing. Once a few of these events pass and I have time to do simple things like oh, breathe and sleep, I know that my writer's block will pass. I have received several emails asking why I haven't updated for so long, so here is the reason why. Just too much going on to give of myself so personally right now. I guess now would be a good time to check my archives and read the old stuff. I am putting myself on re-runs for right now and I'll be back before you know it and giving you the good stuff like normal. Thanks for all the love you have sent me!!

M is for MONEY

...or lack of it. Not only does autism rob you of your very own child, it also sneaks into your savings account and drains you financially. Most of the therapies for treating autism are not covered by insurance or have limited benefits that quickly become exhausted. They will tell you that early intervention is the key in treating autism, but in order to intervene early, you need money. Indiana does have what is referred to as an autism waiver. It's a good idea in theory, but I know of no one who has personally benefited from it yet. You see, it is greatly flawed. Once you are approved, you qualify for everything...it's all paid for by the state. But the flaw is in the fact that the waiting list in 5-7 years long to become approved. So if early intervention is the key...in the state of Indiana, you are just plain screwed.

So what is a parent to do? Well, you cash in your life's savings, your 401K's, you get second mortgages and second jobs...you do whatever it takes to get the money. After all, how can you put a price tag on your child's life? You can't really. The thing I found out was that all the stuff no longer mattered to me. My dream of building a new home, driving a nice car, having nice furniture and clothing...well, it just didn't matter anymore. I got rid of my SUV and downsized to a nice used van...no more car payment, there was an extra $333 dollars/mo right there. That first year AD (after diagnosis) I did a lot to cut corner's. I cut coupons, shopped at ALDI, went to thrift stores and garage sales and looked to eBay to buy our clothes. I found that I was way more savvy than I had previously given myself credit for.

With the money I was able to save around the home, it allowed us to do simple things like buy groceries and pay a few utilites. I recently went on a quest to see exactly how much money we have spent OOP (out of pocket) for things to heal IVY...I almost was sick to my stomach. We currently spend right at about $1000 a month on therapies, supplements, enzymes and food for her special diet. In the beginning it was more like $2500 a month. So calculate that and we have spent over $100,000 at this point. That was more than a down payment for my new home I dreamed of building. That is the part that makes me sick. That is why autism is such a dream smasher. It takes everything out of you and leaves you feeling exhausted, drained, worn out and flat broke.

For the most part, I never talk about the money, but I felt it was worthy of mentioning here because it's part of the stark reality many families with ASD face on a daily basis. Financial stress is the worst stress there is on a marriage according to experts. I think that is why so many ASD parents divorce. I know first hand of the strain it causes and Ed & I have had many disagreements over money AD...but at this point, we are hanging in there...some days by a thread, but we do what we can to make ends meet. As for my dreams...well I would love the new home and car that isn't from 1997...oh and new furniture, I would love that too...and some new clothes and to get my nails done once in awhile...but you know, in the grand scheme of things...those are just *things* and I can't in no way, now how compare them to the fact that my daughter is beating the odds and she IS recovering from autism.

L is for LOVE

I have been stuck on L for awhile now....nothing comes to mind. I was afraid this would happen. I decided to quit trying so hard to think about it and just write something. LOVE comes to mind when I think about autism. I believe that Ivy's sole purpose in life was to teach me about LOVE. I mean I have always known about LOVE in a sense and even experienced it once or twice along the way, but this kind of LOVE I am talking about is the LOVE only learned from a lesson in life kind of LOVE.

When a mother holds her child for the first time, you feel so many different emotions. It is probably the single most magnificent moment in time over all other moments in time. You have created a life and most mother's know without a doubt that their purpose in life was to be this tiny little things mother. Forget everything else you had planned up to that point, because that has all changed now. Now it's about this tiny little creature lying in your arms. Now is when you experience the "Ah-ha" moment. You are now forever in love with this little person you created.

When you hold this beautiful baby and you are lovingly staring at them, you have dreams and hopes for them. You wonder about their life and what will they be when they grow up, etc, etc. When something like autism comes along, all those hopes and dreams are suddenly shattered by words such as, "no cure", "lifelong disability", "institutionalized" and "nothing we can do". It's really a devastating blow I can tell you first hand. All of sudden you are hit with the hard,cold reality that this beautiful child that you created and love is not perfect. Only that is the facade. Because once you swallow the diagnosis and you decided how you are going to handle things, you realize how silly you were for thinking your child is not perfect. In fact, my daughter is still perfect....she just has autism too.

So, when you have a child that has some issues, you go into what I refer to as "mad primal mommy mode". You have such a primal instinct to protect. It's called survival mode to some I guess. You whip out your ferocious mommy instinct's and you get busy. You could just lie down and give up and feel really sorry for yourself too I guess, but what is that going to solve? Not crapola I can tell you. So, you pick yourself up, dust yourself off and you get busy. You do it for YOU, you do it for your child, you do it out of LOVE. You do it because it's the right thing to do. It's not an easy road and there are lots of curve's and bumps and bridges washed out and detours along the way, but you will make it. You will, I promise. And along the way, you will learn what LOVE is really about.

K is for KIRKMAN LABS

This is the place where we order the majority of Ivy's supplements. This company is absolutely top notch. All of their supplements are pharmaceutical grade quality. Here is a little excerpt from their website:

We have more experience - - Kirkman has been serving our customers since 1949. Because we are a basic, manufacturer we can control every aspect of our production to exacting standards. We've listened to our customers' needs for effective, pure and unique products. We work with the world's leading scientists, doctors and researchers to develop the best and most effective formulations. We offer the most extensive lines of casein and gluten free, hypoallergenic supplements on the market (including casein and gluten free Probiotics).

I love this illustration from their website regarding supplementation.

Road map to Supplementation

If you are wondering why we take supplements, please let me explain. The majority of ASD kids have what is called a leaky gut. They have poor digestion and are unable to absorb nutrients properly, so they must take supplements in order to make up for the deficiency. It's very important for those children on the GFCF diet to have supplements that are also GFCF....and KIRKMAN provides that for our children. They have a whole line of personal care products from chemical free sunscreen to shampoo & conditioner. They also carry a line of non-toxic GFCF cleaning products safe for the environment and safe for you too! I would recommend that you check them out!

Here is the link to their homepage. Thanks for reading!

KIRKMAN

J is for JUSTICE (or lack there of......)

JUSTICE.....yes and I do mean the lack of it. One of the things I live with on a daily basis is that there is no JUSTICE in all of this mess. It's the reason I went to Washington DC....to see some JUSTICE. I want it for all those children, not just my child. I want it for the 1 in 150. Every day, I ask myself, "what can I do to make it better"? I don't have the answers, but I do know that my government has failed me miserably. It enrages me to think that my child is nothing more that a casualty of scientific error....

The hard part is being called a neurotic and/or paranoid mother, or that I am being irresponsible and frightening mothers into NOT vaccinating at all. But let me ask you....if you KNEW that something harmed your child, wouldn't you want to tell other mothers to look into it so that their babies wouldn't also be harmed? Or would you just keep it to yourself and never tell anyone...look the other way and say to yourself, "gee, I hope it doesn't happen to their baby". I feel it's my motherly DUTY to share the information I have and let other mom's judge for themselves and make an informed decision on their own.

JUSTICE. It's such a beautiful word when you think about it. John Mellencamp even named one of his children that. Too bad that in the year 2008 it means not squat and has no value left in it. The only time that JUSTICE will be served for me and my family is when the CDC and FDA finally come out and say, "OK, we were wrong and you were right. We messed up really bad and we are sorry and what can we do to make things right for your child?". That is how I spell JUSTICE. Too bad I will never see JUSTICE in my life time though.