Thursday, July 31, 2008

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!!

Sunday, July 20, 2008

Otis K. took a ride to the Kingdom of Heaven yesterday

Yep, it's true, he did. My grandpa, Otis K. Randel(aka Kenny) quietly left this Earth yesterday at age 96. I am so sad because I know I will never see his smiling face again, but I am so happy that he and my grandma are FINALLY reunited after a year and a half. They are together and they are home. I am just so happy for them both. I tried to picture in my head what it must have felt like for him as he was leaving us all behind. Would he see a bright, white light? Would the faces of those left before him be there to greet him? I'd like to think that he experienced them both. How lucky for him. I am jealous...just a little bit.

I am so fortunate that I had my grandparents as long as did. It's not too often that you can say you were fortunate enough to spend 41 & 43 years with them. I think my Grandpa was ready the day after my Grandma died...but he was a man of faith and he understood that God would bring him home when it was his time. Well, yesterday it was his day and it was a glorius, hot, sunny, summer day. What more could you ask for?

I should have known it was coming. My grandma had been dropping pennies all over the place the last 2 weeks. I knew she was trying to tell me something, but I thought maybe she was just saying, I am here, I see you instead. I mean I knew he was going to die. My grandma visited me in a dream not too long ago. One of those: in color, so vivid you never forget kind of dreams. She hugged me and said, "give your mom a message for me, it's important". I said "ok". Then she very clearly said, "tell your mom to treat her father with love and compassion...the way he has always treated her, because he isn't going to be here much longer, because I am taking him home with me". I said, "but wait....." and as fast as she came into my dream, off she went in a flurry as my alarm clock sounded in my ear next to me. I sat straight up in bed and thought "WHOA!!" But I quickly blew it off....that is until the very next day my mom called me and says your Grandpa is in the hospital. So, I tell my mom about the dream and she tells me that just the night before, Grandpa tells her that a woman was shaking him by the shoulder and woke him up in the middle of the night and he thought is was my grandma. So, it was coming, I knew it. Only you are never prepared for it once it comes.

I will miss you much as I miss Grandma, but I am so glad you are together again in God's world. See you on the other side one day.

Wednesday, July 16, 2008

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'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 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 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 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.

Tuesday, July 15, 2008

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.

Tuesday, July 8, 2008


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!


Monday, July 7, 2008

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 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.

Wednesday, July 2, 2008

I is for IVY...of course!

I can actually think of several words that start with letter "I" that I could use to talk about my beautiful, little IVY.

For instance, I could tell you that one thing that autism does to our children is that it IMPRISONS them. They are locked INSIDE themselves. It's the most devastating thing to witness as a parent. You know they are there, only it appears that they are INFINITELY lost. I have these INCREDIBLE pictures that I look back on now and I can literally cry when I see how lost she was. She never looked at me or the camera...almost like you were INVISIBLE to her. She was always looking off to the side or down. Now, her smile is so INFECTIOUS. You can't help but smile when you see her eyes light up in front of the camera.

She is definitely INTELLIGENT. She can be IMAGINATIVE. She is rather IMPATIENT(most days). She is completely IRREPLACEABLE. She seems to be INTUITIVE. She has always been INQUISITIVE and I love that about her. Some days she is just IMPOSSIBLE!! Our conversations are always INTERESTING. It's for sure that she is IMPRESSIONABLE...especially on your heart. She is so sweet and INNOCENT. I know that without a doubt, that she is completely INCOMPARABLE. She has made such an IMPACT on my life. Life before IVY was just an IMITATION. Having Ivy, gave me the INSPIRATION to be a better person, better mother, better wife, better sister and a much better friend. I know that this experience is IMMEASURABLE and has been an INVALUABLE lesson in my life.

Happy Birthday America and have a safe and fun July 4th.