When I last posted, I was off on a journey to find Christmas because Christmas hadn't come to me yet. Last night after dinner with some girlfriends, I was thinking about the fact that I had *found* Christmas. Well, to be honest, I hadn't really *found* it at all, what I did find was that Christmas was with me all along already. :)
Then this morning I received the nicest email ever from an old school mate and neighbor of mine (yes Ken, I am outing you). It just reiterated to me that I indeed had Christmas with me all along. Thanks so much for your too kind words Ken. You'll never know when you might find yourself posted right smack dab in the middle of my blog!
So this is where I found Christmas this week. I saw it in my children's faces as they sang with joy at the annual Christmas play. I saw it in my friend Susan who sends me daily emails of encouragement and tells me how much she enjoys my journey. I saw it in my friend Beth who had a jeans day fundraiser in her office this month and donated the money to us so my girls could have Christmas- you are the best, I swear. I saw it in my mom who is always there to bail me out when I need her. I saw it in my brother who provided Ed with a side job that will more than make up for him not working the past 4 weeks. I saw it in the tender heart of my niece Alexis, who just needs someone she can rely on every day, day in and day out. I saw it in my good friends Carol and Kelly who I had dinner with last night and it reminds me that they have stood by me in good times and bad and they never judge me. I saw it in my online friends who constantly support and love me and probably know me better than my *in real life* friends because I tell them things I am too embarrassed to admit to my real friends. I saw it in my husband who despite the fact that we struggle so much, does everything he does just to please me and to extract a smile from my face or a loving acknowledgment that I see what he is doing. I saw it in our good friends the Livingston's, who set the standard for our family, in that they are a true living example of what a Christian family should be. When I grow up, I wanna be just like you guys!
So, the Christmas Spirit is with me already in all the people that I encounter every day. It's in my new friends and old friends and even in total strangers that come across this blog. If we look deep enough inside ourselves, I think we all find that the true Spirit of Christmas lies within us all....the question is, do we recognize it? Some will and some won't...and them some of us need that pointed out to us (wink, wink).
Sunday, December 21, 2008
When I last posted, I was off on a journey to find Christmas because Christmas hadn't come to me yet. Last night after dinner with some girlfriends, I was thinking about the fact that I had *found* Christmas. Well, to be honest, I hadn't really *found* it at all, what I did find was that Christmas was with me all along already. :)
Sunday, December 14, 2008
You heard me right....just not feelin' it. I LOVE Christmas. It's my most favorite time of the year. Maybe it's the sinking economy, maybe I am depressed, but I am just having the hardest time getting into the Christmas spirit.
Just yesterday, I FINALLY got my tree put up and the house decorated. I can't believe how long it took me to reluctantly drag this stuff out of the attic and get it done. Now that it's up and everything is looking all festive, I am still not feeling it. It looks pretty and sparkly on the outside, but I am not feelin' it on the inside.
I also admit, that I have not bought one single thing for Christmas this year. I am finding it hard to spend money when there are bills to be paid and Ed hasn't worked in 3 weeks due to the unseasonably cold and early winter we have had dumped in our laps. Every day, I watch the news and all I hear is that everywhere, everyone is afraid to spend their money with the economy in the crapper like it is. Well, I secretly confess, I am one of those people.
So, this week, I am off on a personal journey to find the meaning of Christmas in my heart. If Christmas isn't coming to me, then I am going to have to go find Christmas and bring it home. I have a strange feeling that I won't have to look very far. I promise to report back to you and let you know of my findings.
Monday, December 8, 2008
Here are some things that I really believe.
1) I believe there is a God in Heaven and I will go there when I die.
2) I believe there is good in all bad and a little bit of bad in all good.
3) I believe that there is nothing better than the sound of my children laughing.
4) I believe there are Angels walking among us on Earth and that we encounter them everyday.
5) I believe that Ivy was sent to me to teach me patience, tolerance and love.
5) I believe that I can really help the world one person at a time.
6) I believe in the magic of Christmas and still believe in Santa Claus.
7) I believe in the power of prayer. I have witnessed it first hand.
8) I believe in laughter. It really is the best medicine when you are down.
9) I believe in love. I am still a hopeless romantic.
10) I believe in YOU. Whether you are my friend, my family or a total stranger, I believe in YOU.
Saturday, December 6, 2008
We are planning on putting up the tree today. Time to drag out the 47 boxes of who knows what and make the tree look pretty. I love Christmas. It's my favorite holiday. It's the one time of year, that I can kind of let go of all the stress in my life and enjoy the season and what it stands for.
Several years ago, we were really, really tight on money for Christmas gifts. To be blunt, there just wasn't any money and I was looking for ways to cut corners and still make the girls' Christmas special. It was during this time that I had conversations with friends that made me realize that Christmas wasn't really about the stuff. It was about being with family, setting traditions, and giving of ourselves that really mattered.
This is when I heard about The Four Gifts for the first time. It was intriguing and we decided to give it try. Since it's inception in this house, we have never looked back. My girls now know what to expect on Christmas morning and there is no disappointment involved. I hope that by doing this tradition, that my girls also learn that it's not about the stuff. Perhaps one day, they will carry this tradition into their own families.
Here is the run down of what The Four Gifts consist of:
The Gift of Warmth: this is usually a new pair of jammies, preferably Christmas themed and/or some cool and funky toes socks, or maybe a new bathrobe, blanket or cozy throw....anything to keep you warm. This gift is opened on Christmas Eve.
The Gift of Knowledge: this gift should be something one can learn from. An educational toy, book or DVD. Maybe something neat like a microscope, telescope, or a kid sized sewing machine....or it can be as simple as a book about Outer Space. Anything that gives them the gift of knowledge.
The Gift of Love: this gift is tricky as it has to be homemade. Something that YOU make and that comes from the heart. Whenever you put your heart, sweat and soul into something, it always means more. I have made throw pillows, doll clothes, fleece blankets, knitted scarves....you get the picture...as long as it is homemade, it comes from love.
The Gift of Joy: this is my favorite. This is usually something bigger and something that will bring the recipient JOY! I usually save this for last. This is the one big thing that is on their list. If you have a little money, then feel free to splurge here. Examples of years past for us were a Nintendo DS, Rose Petal Cottage, an electric scooter, a new bicycle, big huge 3 story Barbie playhouse etc. The sky is the limit where this gift is concerned. If your children are still small and still believe, then this can be left unwrapped and what comes from Santa. (wink, wink)
So I hope someone out there finds this inspirational and tries to instill this tradition in their homes this year. With the economy down in the pits the way it is, it's the perfect time to start downsizing the stuff. Try it, you just might like it. :)
Thursday, December 4, 2008
This year, I am giving away free carbon offsets for one day to all my cyber friends, since we suck up so much energy being on the computer all the time. :)
Please click the link below to claim your gift. Together we can change the world. All I ask is that you pay it forward and pass on the offsets!! Hurry because I only have 25 gifts to share.
Monday, November 24, 2008
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.
Easy Breezy Deviled Eggs
Boil your eggs until hard, then rinse in cold water to stop the cooking. Carefully crack and peel the eggs. The trick to getting perfect eggs is to NOT use super fresh eggs bought the day before. If you can buy your eggs about 1 week ahead of time, they come out perfect. I have heard that adding a pinch of salt to the boiling water works well too to keep the shells from sticking, but I have never tried that method.
Slice the eggs in two and dump the yolks into a mixing bowl. After you have all your yokes, beat them with a hand mixer until fine and crumbly. Add Miracle Whip and some dry mustard to the yolks, beat until smooth and to taste. I like to use LOTS of Miracle Whip. When my mixture is nice and smooth, I scrape out the entire amount into a gallon size plastic baggie and close. Snip the corner off of one ened and then pipe in the mixture into your empty eggs halves and viola! Now sprinkle lightly with paprika and you have some mighty fine looking deviled eggs that will be the hit of your Thanksgiving dinner, I promise.
Super Stuffed Celery
Wash and dry a package of celery stalks. Cut the stalks into 3's.
In a mixing bowl, cut up chunks of Velveeta cheese...about 2 cups worth. I like to cube it small, it makes for easier mixing. Then dump about a cup of Miracle Whip on top and beat with a hand mixer. It will be chunky and smooth at the same time, if it isn't then keep adding Miracle Whip until you get the above consistancy I mentioned. Next, stuff your celery with this cheese mixture and arrange on a nice plate. Sprinkle lightly with paprika and serve cold. People will love this tasty little appetizer on Thanksgiving Day! Enjoy!
Saturday, November 22, 2008
I love pumpkin pie. I could eat a whole pie myself. I swear! It's the total truth. I have done it many a times over the years. There is nothing like a slice of cold pumpkin pie drenched in Cool Whip, eaten for days after Thanksgiving is over.
Anyway, several years ago, I ran across a pumpkin pie recipe that rocks this world. I found it in Country America magazine, dated October 1991, so you know this recipe is OLD. You should see the page. It has splatters of pumpkin and who knows what else on it and it's all faded because every year, I faithfully drag my little recipe out to dutifully make my pies for Thanksgiving Day.
So, without further ado, here it is to share with you:
Lisa's Famous Pumpkin Pie
1-29 ounce can pumpkin
1 cup packed brown sugar
1/3 cup honey
1 tbsp cornstarch
1 tbsp ground cinnamon
1/2 tsp salt
1/4 tsp ground nutmeg
1/8 tsp ground ginger
dash of ground cloves
3 large eggs
1 to 2 12-oz cans evaporated milk-you may extra for the right consistency
1 tbsp melted margarine
1/2 tsp vanilla
Combine pumpkin, brown sugar, honey, cornstarch, cinnamon, salt, nutmeg, ginger and cloves in a mixing bowl. Add eggs. Beat lightly with a rotary beater or a fork.
Stir in evaporated milk and margarine; mix well. Pour into two unbaked 9" pie shells.
Cover edges with foil. Bake at 375 degrees oven for 25 minutes. Remove the foil. Bake about 25 minutes more. Cool. Cover and chill to store. Makes 2 pies.
Notes: I like to use Farmer's Market Organic pumpkin, but you can use whatever brand you like best. I also use all organic ingredients if possible. Also, you can either make your pie crusts, buy the Pillsbury roll out dough, or buy the frozen pre-made shells in the freezer section. I have made them all three that way. Enjoy!
Tuesday, November 18, 2008
So, where is everyone going for Thanksgiving? I normally cook and have people to my house, but this year, I don't think we will have any company. It looks like it's just going to be the four of us. It doesn't matter. I will still knock myself out to provide a fantabulous meal for my little family. I want to create memories, so that my children will undertand the importance of families being together and traditions and Thankfulness.
Jade is already excited about which cooking projects she will be helping me with this year. I think she wants to take on the pumpkin & apple pies Wednesday night before and she has already called deviled eggs. She loves to get in the kitchen as much as I do. She gets in honestly. :)
So, here is my menu:
Turkey Breast (with just 4 of us, I decided a turkey was too much and no one likes dark meat in my house, so....)
Homemade stuffing (none of the boxed stuff)
Fresh Corn (from the local orchard)
Stuffed Celery Deviled Eggs
Homemade Yeast Rolls
Apple Caramel Crisp Pie
Later this week, I will post all my secret recipes for my stuff. LOL!! :)
Sunday, November 16, 2008
With Thanksgiving just around the corner, it reminds me that I should remember the things and people that I am grateful for. One thing I have learned over time is to try to walk through life with an attitude of gratitude. I am going to make my gratitude list and I encourage you to do the same. All you lurkers, now is the time to join blogger so you can share your lists too. I look forward to reading what YOU are grateful for this Thanksgiving Holiday.
Top 10 Things I am Grateful for:
1) God who is everything to me, without Him I am nothing.
2) My husband Ed, who I don't deserve most days
3) For Jade, my angel
4) For Ivy, my little yellow canary
5) For friends and family that are always there to encourage me
6) For my job that provides us with insurance
7) For the sound of my girls giggling together and getting along
8) For the sunshine and all that it does for my mind, body and soul
9) For a good book, that I can dive into and escape to another place and time
10) For my online community that I adore and have the privilege of *knowing*
Friday, November 14, 2008
You would think after all this time, I would be AWARE enough to recognize the obvious. For the past 14 years, I have not liked November so well. Just too mindful of events I want to forget. My Dad's birthday was the 7th and the anniversary of his death is today. I miss him. Totally. I haven't had a Thanksgiving or Christmas with my entire family together since 1993. It's depressing to say the least. This year instead of succumbing to the misery, I will attack it head on. I plan to go to the cemetery today (which I have not done in years), have a talk with my Dad, go grab my fave Chinese carry out (pork lo mien and general chicken WITH chopsticks), grab a movie and head over to my friend Joe's house tonight and hang out with him. He always makes me laugh. Just what the doctor ordered for curing the blues and crabbiness.
Thursday, November 13, 2008
I could hardly wait to get to my blog today. I have a story I want to share. Last night, I believe I had one of those "ah-ha" moments of clarity and I want to put it in writing. For months now I have been praying a short and simple prayer to God, "please heal me because I am broken". It occurred to me last night that maybe, just maybe I am already healed. Kind of a weird way to put it. How can one be healed and not know it? Well, for me...maybe because I was too busy feeling sorry for myself to notice that I am, could be the answer. Now for the story. Sit back, relax, grab a cup of coffee, it's going to be a long one.
Growing up, I was forced to listen to the likes of Roy Clark, Buck Owens, Loretta Lynn, Charlie Rich, George Jones, etc. My Dad always had the stereo blaring with one of those great country legends on Saturday mornings. As a young girl, I DID NOT appreciate being forced to listen to music I'd rather not. Growing up in the 70's, I also had influence from my older siblings that turned me on to The Beatles, Led Zeppelin, The Who, Creedence Clearwater Revival, Nielson, Pink Floyd and the likes. NOW THAT was music!! That kind of music made my heart sing. To this day, I love rock-n-roll....even the heavy metal stuff. I love how it speaks to my soul and rocks me like a baby. That is my music of choice.
Over the years, I have developed a love for other kinds of music like disco, the blues, jazz and even rap. To me, there is always a song being sung somewhere that can describe a person's mood at any given time. I love how I connect to music of all types. Somewhere in the late 80's, country music sort of took off like a rocket and suddenly it was almost cool to be country. I was living in California at the time and I was making a weekly trip from LA to Bakersfield to see my sweetie at the time. I remember my Mom making me a couple of tapes to listen to on the way up in my old '66 Mustang. She told me that music was not all about Guns-n-Roses and Bon Jovi...that I needed to experience some good 'ole country music too. The two tapes she made me where KT Oslin and George Straight. From the minute I put George into my tape deck, I fell in love with his music. I wore that tape out. There is nothing like listening to the sweet melody of a George Straight song. I bet you can guess that lead me to my love of country music for the next several years. I mean I was crazy in love with country music. I had all the CD's, knew who was hot and who was not, learned to 2-step and wore my Wranglers and Ropers and was a country girl at heart. I never gave up my rock-n-roll roots, but it did take a back seat for a while while I was having my love affair with country music.
Then one night, I meet the man I knew I was going to spend the rest of my life with. He seemed to complete me and he loved country music too. So we often listened to the music together and would swap CD's and keep each other up to date on who was our faves for the moment. We spent 4 years together. I thought it was a match made in Heaven. I had never been in love so much before. I was absolutely head over crazy heels in love with this guy. I loved his family, they loved me. It was really, really perfect. He told me often I was beautiful and that he loved me and wanted to spend his life with me. He called me daily at work, just to say "I love you" and often would surprise me with flowers at work for no reason. I thought life couldn't get any better. This man was for me. I knew that God had sent him to me and that we were going to live happily ever after.
On February 2, 1995, he surprised me with a beautiful birthday dinner and a lovely gift. Could this guy get any better I remember thinking. Then, out of nowhere, he calmly explained to me that he no longer wanted to be with me and that we were not going to be getting married after all and he didn't want to see me anymore. I was devastated. I was crushed. I couldn't breathe. I wanted to die, it hurt so bad. I couldn't understand the sudden change of heart. When I told people he broke up with me, they thought I was joking. His family and our friends tried to talk to him and all he would say, was she deserves someone better than me. WTH???? What does THAT mean? I deserved someone better? It left me hurt, angry and confused. All I wanted to do was wake-up from my nightmare. I would sit for hours and stare into nothing and I ached like nothing before. I wanted to just die. Consequently, at that moment, I could not bring myself to listen to country music. It became like fingernails down a chalkboard to me. It made my stomach turn to listen to it and I instantly hated it.
Enter the new sounds coming from out of Seattle like Alice in Chains, Soundgarden, Nirvana and Pearl Jam. That music sang to me like no other music ever had. It was deep, dark, hypnotic and mysterious and all about PAIN. I clung to it like a wet blanket. It eased my pain, if only temporary. Yes, I sure had a new love, and it's name was Seattle Grunge. I soaked myself in the grunge scene, because I had some pain buddy. I had pain to share and I had pain to give back to it. Pain was all I knew. I was forcing myself to get up and move everyday and work for money to pay the bills. By night, I would smoke and drink and ease the pain to the tune of Down in a Hole and I would marvel at just how much I felt like the lyrics that Layne Staley was belting out to me. I had a HOLE as big as the Grand Canyon inside of me and I needed to fill it with something. I filled it with cigarettes, booze and sex. Not proud of that fact, but it's who I was at the time. I just wanted to ease the pain, if only temporary. I knew one thing and that was that I HATED country music. It was a lie and I no longer believed the promise that it offered. I decided somewhere in the summer of 1995 that I would never, ever listen to country music again because it reminded me of HIM.
From 1995 up until last night, I have kept that promise. Country music has been hated by me (I can really hold a grudge when I want to) and I have been faithful to my promise to myself, that I hate country music. Country music has had nothing to offer me. I refused to even let it into my heart, so why bother. Over the years I have heard songs here and there that I was able to give credit to where it was due and acknowledge that country music stars are talented and they deserve recognition. But that kind of music was for the other people in the world, not people like me, in pain. I really believed that with all my heart. As you know the story, I met and fell in love with Ed and I moved on from the pain somewhat, but never letting Ed get too close to me. Even after 12 years together, I have never really ever let him into my heart all the way, it's too risky. It was so much easier loving him from afar I thought. No chance of being hurt again. Probably not the best way to live ones life I guess. Totally not fair to Ed as well.
Last night, while flipping through the channels looking for something to watch, I came across the CMA's. I decided to watch for awhile at Ivy's request. So we snuggled up and began watching and guess who performed right after we settled in? You can probably guess that it was George Straight. I remember thinking after he was done, "wow, that man still has it after all these years". But then as quickly as that thought came out, my next was "well that was just a fluke, then next song will suck". But I kept watching and while I didn't get much out of Kelli Pickler and Taylor Swift's new age country performances, I was thoroughly entranced with Alan Jackson, Brad Paisley, Trace Adkins, Brooks and Dunn, Reba, Kenny Chesney and Keith Urban. I found myself still watching long after Ivy had succumbed to sleep. I remember asking myself, "why are you STILL watching this stupid show Lisa??? You don't even LIKE country music, r-e-m-e-m-b-e-r???". But I kept on watching and then Carrie Underwood came out and sang this beautiful and very powerful song about loss and the flood gates opened when I heard her belt out one line that said, "I could hardly breathe.....this can't be happening to me" and all of a sudden for the first time in 13 years, I connected to it. It was like electricity running through my body. I was alive and at that very moment, it occurred to me that my heart was actually healed because I had let country music back into and it felt so right. I knew in an instant that my prayers had been answered. My simple, little prayer: please heal me because I am broke. God knows that I am too inattentive to hear him speak to me softly. He has to speak to me with ways that I can connect to and for me last night, it was through music that I love so much and connect to so well....even if it was "country" music in the end. What a day to be thankful for. The hard part is now moving forward with the knowledge that I am healed and I now need to move on. I am sure it won't be easy, but I love that I have finished with what seemed to be an excruciatingly painful growth process here. Move forward, keep breathing, move forward, keep breathing......
Monday, November 10, 2008
I sometimes go back through my older blog posts and re-read what I have written and I like to measure my progress. I use it as sort of a checks and balance type thing. I like to see if I am moving forward as I know God wants me to, or if I am going backwards and wallowing in the muck of self-pity. Can I just say wow? What a roller coaster ride the past year has been. There have been some really high, highs and then have been some really low, lows as well. I am so glad that I can just surrender my heart and all that it holds to God when it seems that I cannot bear another minute inside my own skin.
One post in particular really shouted out to me and I just want to clarify that Ed & I do not HATE each other. While we do, have and are currently experiencing marital difficulties, we are not disrespectful to one another. We remain friends. We do argue, like all couple do, we just argue more often these days due to the stress of autism. But we can still laugh together and I guess that would be a good thing. Second, my kids do not hate me and they don't hate each other...it just SEEMS that way some days...especially on a day when Ivy has had too many dietary infractions and is on sensory overload. She can be demanding and overwhelming to deal with. It's those days that nearly break me. But it's those days that I have forgotten the most important thing I have ever learned about God. I forgot to turn it over to Him, so that he could grant me peace and that I could know that by HIS grace, I am not bearing this burden alone and that I am forgiven. Seems pretty simple as I read back through some of the painful posts now. Wonder why I never saw that at the time? Some one please point that out to me next time I post a pity party post (aka PPP) will ya???
Wednesday, November 5, 2008
This is THE BEST soup ever for this time of year. I highly recommend whipping up a couple of boxes of Jiffy Cornbread Mix to go along with it. This tastes even better the day after. I guarantee you can't eat just one bowl, so enjoy!!
1 lb ground sirloin (or chuck)
5 c water
1-16 oz can diced tomatoes
1 c chopped onion
1 c sliced carrots (like coins)
1 c chopped celery
1/3 c pearl barley
1/2 c ketchup
1-2 tbsp beef bouillon granules
2 tsp seasoned salt
1 tsp dried basil, crushed
1 whole bay leaf (removed later)
salt & pepper to taste
In a large pot or dutch oven, brown the beef, drain off the fat. Add the water, tomatoes, onion, carrots, celery, barley, ketchup, bouillon, seasoned salt, basil and bay leaf. Bring to boil;reduce heat and simmer, covered for 1 hour or until carrots are tender. Season with salt & pepper to taste, remove bay leaf. Makes 10 cups. Freezes well in 1 cup or 1 pint portions.
Monday, November 3, 2008
I love Fall. I love that we are having a beautiful Indian Summer here in Indiana. The forecast for Halloween was wonderful. We trick-or-treated in the nice cool, crisp early evening air. Not too cold, just right. No need for winter jackets underneath their costumes either, LOL.
Fall means pulling out your sweaters and making pots of chili and veggie soup. I love the leaves changing colors on the trees in my yard. I hate raking them however...who likes raking leaves??? It means you start thinking about Christmas and what's on your list for Santa. It means clearing out the clutter before the holidays. Yes, I love Fall. I forgot how much I love Fall.
I think I'll pull out an old sweater, curl up with a good book, light my pumpkin spice candle, make a pot of Hamburger Soup and let Fall hang around this year.
Tomorrow I will post my recipe for Hamburger Soup. :)
Friday, October 31, 2008
Yeah, a NINE year old had to bring me to my knees today. Earlier, I posted an angry post about some social snobs I know. I decided to delete it after Jade made a simple statement to me that brought me to my knees. It made me so proud of her at that very moment, I wanted to cry. So when I think I am the worst mom in the world some days, I can know that I must be doing something right. My nine year old just put into perspective for me something I couldn't.
I was ranting about certain people from our little school and how they look down on people like "us" because we are different compared to them. I made the choice to send my kids to a private school and they sometimes suffer for that. We have placed them amongst some very well off families. Some of those families are as nice and down to earth as you could ever want. We have met some really wonderful, loving people there. Some of them however, want you to KNOW just how much money they have and they want you to KNOW that you are less then they are. They want you to KNOW that you don't belong among them.
So, I am sitting here talking with Jade and asked her what she thought about pulling out of our little private school and attending public school next year. And then we talked about why she never has play dates and invites and this is what she said to me:
"Mom, I would die if you take me out of that school. I love that school and I love the teachers and I love that I get to learn about God there. I can't do that in public schools...and Mom, who cares if I don't have play dates and invites? It really doesn't matter to me anyway. If they don't like me then, oh well."
That's right Jade. You got it right baby. You go girl!!!
Wednesday, October 29, 2008
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!!
Tuesday, October 28, 2008
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.
Tuesday, September 23, 2008
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!
Sunday, September 21, 2008
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?
Monday, September 15, 2008
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!
Saturday, September 6, 2008
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...
Saturday, August 30, 2008
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:
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.
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.
“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.
Thursday, August 28, 2008
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!
Thursday, July 31, 2008
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
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 Grandpa...as 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
...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.
Tuesday, July 15, 2008
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
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.
Wednesday, July 2, 2008
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.
Saturday, June 28, 2008
What is HBOT you ask? Glad you asked! It stands for Hyperbaric Oxygen Therapy. It's something new in the autism community that parents are trying for their children. I am considering this for Ivy. We could buy our own chamber for about $15,000. I am not sure where I could come up with that kind of money, but where there is a will, there is a way, right?
I am going to include this YouTube video showing what HBOT is and how it works for kids with autism. Very interesting indeed.
Tuesday, June 24, 2008
Like my own daughter, you will find that many kids on the spectrum are GIFTED and many fall under another classification called hyperlexia (a precocious ability to recognize written words significantly above an individual's language or cognitive skill level).
BEFORE Ivy was diagnosed with autism, I actually thought at one point she might be a baby genius. Don't laugh....I really did! Here she was just about 15 mths old she couldn't even ask for a drink, but she could read. Weirdly enough, my sister-in-law had given her this old Fisher-Price Electronic Alphabet Board and she LOVED that toy...it was her favorite. She taught herself to push the I and the V buttonson the board...like it was saying her name. She would push the buttons over and over and it was talking to her, I-V, I-V, I-V, I-V.....I thought to myself...what a little smartie she was...then a week later, I was passing through the living room, when I hear the board saying the letters J-D, J-D, J-D, J-D (we call Jade, Jadie for a nickname sometimes). Man, isn't that cute and she is awfully smart!!
Well, that you may think is not so special...even at 15mths....then listen to this. We had a box of alphabet fridge magnets in the garage left over from when Jade was a toddler and thought well, she since seems to like letters, numbers and shapes so much...maybe she would like to arrange them on the fridge like Jade did at this age. So, I send Ed out to hunt them down. Five minutes later, he comes in with the box and says, "Ivy come see what Daddy has for you". Ivy doesn't seem too interested, until he pulls the first letter out which happend to be a "G". Ivy said in her toddler talk, "sa Gee". I thought to myself...did she just say G...and if so then lucky guess little girl. :)
Then Ed pulled out the next letter which was an "S". Ivy said, "sa, Essss". And then Ed & I looked at each other and said, "whoa...how does she know these letters"....and then quickly followed by a "nah...that was just a freak thing". So Ed pulls out a third letter and this time he puls out an "X". Ivy gets excited and says, "es EXXXXXXX". Then I just about choked on my own breath. I said, "Pull another one out, pull another one out!!!" So, Ed continues to pull random letters from the box.....and to add to storyline here....there were actually two sets of magnets in the box...both upper and lower case letters and I want you to know that she guessed every single one of them right except one. When Ed pulled the lower case L out, she said it was a number ONE......not bad and very close IMHO. We had NO CLUE how she learned the letters at such an early age. We had never worked with her on the alphabet either. She had that electronic alphabet board and that was it. SHE MUST HAVE TAUGHT HERSELF!!
So, it started there with the box of refrigerator magnets. A few months after that, while driving down the road, she rattles off....T-A-C-O-B-E-L-L....TACOBELL!! And then stuff like, S-T-O-P....STOP!!! J-A-D-E...JADIE!!! I-V-Y....IVEEEEE!!!! She was so amazing, I really thought she was gifted for her age. I mean her favorite books were What to Expect When Expecting and What to Expect The First Year. She loved those books and would spend hours looking at them intently and turning each page to soak it all in. It didn't surprise me when she starting reading little words in books by age two at all. Dr. Suess was her favorite and she was reading by herself by age three.
After letters came numbers, shapes and colors. She loves them all and her world revolves around numbers, sizes, shapes, calculations etc. Ivy has something called sight counting. She can look at something and know how many there are without even counting. An example of that was when she was four, we went on a field trip with her pre-school class to the Indy Zoo. We walked into the Penguin House and she got all excited and yelled out, "Look!!! It's thirty-seven penguins!!!"
Her teacher and I just looked at eachother and laughed, then I stood there looking at the penguins and started counting the little ones standing on the ledge...and yes, you guessed it...there were thirty seven of those little penguins lined up in a row! Amazing, isn't it? Well, the following July4th, we went to watch the firework show at the local high school football field when she watched she would yell out things like, "oh, it's 200 stars"....."ooooh! It 437 stars"...and this went on through the entire show yelling out numbers every time one went off. We laughed and I can't count that fast, so I will take her word for it that she counted correctly.
Ivy also loves to keep track of people's birthdays ands how old you are. She never meets a person without wanting to know when your birthday is and she will then file it away and tell you if she knows anyone else that has a birthday the same day and who else has one in the same month. She really is amazing when it comes to this. I can't tell you how many birthdays this child has memorized.
She loves the weather and knowing how many degrees it is and if it's sunny, cloudy, windy, rainy, etc. She wants to watch the Weather Channel in the mornings, not cartons. She HAS to know what the temperature is outside now and what it will be today and tomorrow, etc.
I guess as I reflect back now as I type, she really is GIFTED. She is a gift. She is my gift from God and who am I to question that?
Sunday, June 22, 2008
When you have a child that has autism, you will need all three of those things in order to survive in life. I love how Jenny McCarthy described in her book, Louder Than Words when someone's child is diagnosed with cancer, they rally around you and grieve with you and cook for you and hold your hand...but when your child is diagnosed with autism...people stop calling you for play dates, dinner and shopping and they avoid you out in public, lose your phone number and they say things like, "she just looks so normal". Yeah, you're right, she DOES look normal, but you aren't with her 24/7 like we are. You aren't there to see the midnight meltdowns and what happens when you feed her food she isn't supposed to have while she is with you (the after effects which are never while she is with you....it's always hours later when it kicks in and usually lasts for DAYS after).
You aren't there when she is on sensory overload kicking and screaming because she wants to wear a dress and there are none clean and nothing else will do and she has verbal barf and looks like Linda Blair from the Exorcist spewing split pea soup. You aren't there to see her cry when she can't make any friends and no one wants to play with her because she is different. You aren't there to see those little things about autism that no one else except her mom, dad and sister know about. That's the part people do not understand. She seems so normal on the outside, doesn't she? That is the part that makes it so difficult for friends and family to understand.
When it comes to friends and family(aka F&F), you have to have a support network of some kind or you will get sucked into the black hole of autism. Autism rules your life and it dictates how every little thing will happen in your daily life. I don't care how good of a dispostition you have, when autism rears it's ugly, ugly head....you better run for the hills or else it will sweep everyone away in it's wake. After a time living like this, it's starts to chip away at your soul...your spirit...your sense of self. You start to lose faith that things are ever going to get better.
Like I said, what families with ASD kids really need in their lives is a great support network. They need people to take one or more of their children overnight so the parents get some together time (soooooo many ASD families end up divorced due to the stress). They need to offer to cook dinner once in awhile for the exhausted moms. They need someone to offer to help them clean and organize their homes (most ASD mommies are too frazzled to organize anything after a time). They need someone to offer to drop by and watch the kids while you run errands for a couple of hours. That's the kind of support you need. What we need is for you to believe us when we say she can't eat wheat and dairy, that we mean it. We need to be trusted that we know our child better than you do and respect our rules when it comes to food. What we need the very most from our F&F's though, is just a shoulder to lean on. ASD parents need to be able to blow off some steam and get out their frustrations (because there are many). I wish the F&F's of ASD families understood these simple gestures. Reaching out to ASD families is all that is needed....for someone to say, "I see you struggling and I am here....what can I do to help"?
Last that brings me to FAITH. Faith is something I have always had until recently. I think that I am so exhausted, so frazzled, so disorganized, so behind, so lost and so empty from autism sucking the life out of me that it's really hard for me see past the mountain of doubt standing before me. I know the way to get the faith hook-up...I just can't seem to get around that dang mountain. When I feel my faith start to slip away, I always begin to isolate myself. I withdraw within. I hide out and feel sorry for myself and wallow in my own self-pity. I hate being there. I hate that I am that person...but that's just how I feel right now. I feel like I have no faith that things will ever get better for us. I feel helpless and alone. But as a parent of an ASD child, I have had to have FAITH that all that I have done is worth it. All the heartache,sleepless nights and all the sadness is worth it. My faith is what keeps me from completely sinking under. Even though at times I feel like I am white knuckling it...I know that if I just hang on...God's going to send someone out to dig me a tunnel so that I can get through that stupid mountain. So to all the ASD parent's out there...hang in there and have FAITH! That mountain will move, eventually......
Saturday, June 21, 2008
This is another supplement used in the DAN! protocol. Most people that eat the standard American diet (SAD) could benefit from using EFA's since most of today's food is completely depleted of the EFA's. Here is an article written by Deborah Matthew, MD pertaining to the use of EFA's and why they work.
Autism is the fastest-growing developmental disability in the US, currently diagnosed in 1 in every 150 children. It is more common than pediatric cancer, diabetes, and AIDS combined. Despite these statistics, Autism remains poorly understood and often difficult to diagnose. This is partly because Autism is a spectrum disorder, meaning it manifests itself in many different forms. Some children with Autism may rarely speak and have difficulty learning to read or write, while others are so high-functioning that they are able to attend classes in a mainstream school. Unfortunately, there currently is no cure for autism. There are, however, some interesting theories on Autism that lend themselves to dietary interventions that may prove beneficial.
One theory is that Autism may be partly caused by a problem with metabolism of essential fatty acids (EFAs). EFAs are compounds that cannot be made in the body, but are essential for many biochemical processes. For some unknown reason, the brains of individuals with Autism may have problems converting EFAs from foods into the forms necessary for many biochemical reactions. When these biochemical reactions fail to take place, they lead to the signs and symptoms of Autism.
EFAs fall into two major categories: omega-6 and omega-3 fatty acids. Omega-6 fats are found in milk, eggs, meat, grains, processed foods, and many cooking oils, whereas omega-3 fats are found abundantly in flax seed, walnuts, and fish such as salmon, halibut, mackeral, herring and tuna. The relative ratio of omega-6 to omega-3 fats is critical to the health and development of the brain. As the levels of omega-6 fats rise higher and higher, there can be negative effects on cognition, mood, and behavior. As our society has become more dependent on processed foods, levels of omega-6 fats have risen. Many believe that this has helped contribute the increasing prevalence of Autism.
The major omega-3 fatty acids are DHA and EPA. Both DHA and EPA have been found to affect many aspects of brain function. Studies in rats have shown that changing the amount of EPA and DHA in the diet can alter the amounts of certain critical chemicals in the brain. Currently, there have been only a handful of studies on the effectiveness of omega-3 fat supplementation as a treatment for Autism. However, in those studies done so far, there appeared to be an improvement in overall health, cognition, sleep patterns, social interactions, and eye contact in Autistic children given supplemental EPA and DHA. Further studies are needed.
There has been no research on the optimal dose of EFAs for treating children with Autism. The dose range in current studies is 540-2320 mg of omega-3 fats per day. Doses in this range do not appear to cause any significant side effects. As long as EFAs are less than 10% of total dietary intake, they are considered safe. However, it must be noted that fish oil supplements can contain contaminants such as mercury, hormones, dioxins, and PCBs. Thus, care must be taken when purchasing fish oil supplements to find those that have been purified by molecular distillation and are described as pharmaceutical grade.
As the incidence of Autism continues to rise without a definitive cure, novel therapies must be considered. The negligible risks of omega-3 fat supplementation are far outweighed by the potential benefits, so it appears that this treatment should be considered in those suffering from Autism.
We use EFA's for our whole family, not just Ivy. We only use Nordic Naturals. They are by far the best on the market.
Friday, June 20, 2008
DAN! stands for Diagnose Autism Now! This is the protocol we have used to recover Ivy from autism. Many people chose this route. It is a biomedical treatment for autism. If your child or someone you know has a child that has recently been diagnosed with autism, I highly recommend you find a DAN! doctor in your area. They specialize in the treatment and recovery of autism.
What Is the DAN! Protocol, and What are DAN! Doctors?
Defeat Autism Now (DAN!) is a project of the Autism Research Institute, founded in the 1960's by Dr. Bernard Rimland. DAN! doctors are trained in the "DAN! Protocol," an approach to autism treatment which starts with the idea that autism is a biomedical disorder. Specifically, DAN! doctors feel that autism is a disorder caused by a combination of lowered immune response, external toxins from vaccines and other sources, and problems caused by certain foods.
What Do DAN! Doctors Prescribe?
Many regular physicians or pediatric physician's do not conduct extensive medical testing for autism, because they believe, incorrectly, that the only useful medical treatments are psychiatric medications to reduce seizures and behavioral problems. Some of the major interventions suggested by DAN! practitioners include:
-Nutritional supplements, including certain vitamins, minerals, amino acids, and essential fatty acids
-Special diets totally free of gluten (from wheat, barley, rye, and possibly oats) and free of dairy (milk, ice cream, yogurt, etc.)
-Testing for hidden food allergies, and avoidance of allergenic foods
-Treatment of intestinal bacterial/yeast overgrowth (with pro-biotics, supplements and other non-pharmaceutical medications)
-Detoxification of heavy metals through chelation, B12 shots, etc
View the list of practitioners who have agreed to assist families with autistic children in pursuing the DAN! approach.
Thursday, June 19, 2008
This is a type of therapy/treatment for the symptoms of autism.
We personally have chosen to NOT use chelation with Ivy. I could have really missed the bus here, but so much controversy has surrounded the treatment that I wasn't convinced it was in her best interest. I was lucky that Ivy responded well to other types of therapies. I had to use my "mommy instinct" and I have just shied away from the treatment thus far. I researched and chose an alternate method in clay baths. They are all natural and holistic. We use these baths here: Kids Clay . But I do want to say that I have read and heard from many a parent that have said, chelation has brought their children out of autism or greatly improved their symptoms. So, to the warrior moms that have tried it and were successful, I stand behind you 100%. You rock!
Because this is such a widely recognized therapy for ASD kids, I felt I had to present it to you. The following is an excerpt from Dana's View web page. Dana has a wealth of information on her website and it has been an invaluable tool to me over the last 4 years.
Several ASD researchers theorize that many ASD children have a genetic predisposition to metal injury, and the metals found in vaccines or other environmental exposures trigger a biological response which is manifesting as autism. There is also some evidence that several other diseases are also a result of metal toxicity, including allergies, asthma, fibromyalgia, memory issues, and depression. For a more complete list, click here.
Removing the metals from your child’s body is called "chelation" [key-LAY-shun]. This process is not without risks, but it has the potential of producing the benefit of your child significantly improving in functioning, even potentially to the point of no longer qualifying as autistic. But because it does have risks, you need to research it and determine for yourself if it is something you would like to consider for your child.
Chelation is a slow process, to make it as "safe" as possible, minimizing the chance of potential risks. Many children do show improvement rather quickly, but it can take as long as two years to realize the full effect of any improvement which will be related to chelation. And, if your child is NOT metal toxic, chelation will have basically no effect.
If you would like to learn more about chelation (because it's not really easy to explain) click here.
Wednesday, June 18, 2008
It took me a long time to understand that behavior is communication with ASD kids. Once I got that through my thick skull though, I was able to use it to my benefit. Now when Ivy gets cranky, irritable or discontent, I know there is an underlying issue at hand and it's up to me to figure out what the "real issue" is, so we can move forward. The following is an excerpt from Ellen Notbohm's TEN THINGS YOUR STUDENT WITH AUTISM WISHES YOU KNEW.
For children with autism:
Behavior is communication. All behavior occurs for a reason. It tells you, even when my words can’t, how I perceive what is happening around me. Negative behavior interferes with my learning process. But merely interrupting these behaviors is not enough; teach me to exchange these behaviors with proper alternatives so that real learning can flow.
Start by believing this: I truly do want to learn to interact appropriately. No child wants the negative feedback we get from “bad” behavior. Negative behavior usually means I am overwhelmed by disordered sensory systems, cannot communicate my wants or needs or don’t understand what is expected of me. Look beyond the behavior to find the source of my resistance. Keep notes as to what happened immediately before the behavior: people involved, time of day, activities, settings. Over time, a pattern may emerge.
**On a side note, we went swimming today and had a little fun. Ivy conned me out of a hot dog on a real wheat bun today...behavior tonight? You betcha!!! Anytime we do dietary infractions, there will be a consequence to that (much to my disadvantage). But sometimes, you just have to let a kid be a kid and swim and have a hot dog on a bun all in the same day! Right now she is happy as a lark and I am happy that she is happy. :)