Tuesday, December 20, 2016
Why I Didn't Run on Christianity
Saturday, June 20, 2015
The Man Who Supports Me
I've known my husband for 10 years. For 10 years he has been my best friend, my partner, my lover, the father to my children. He has supported me through every adventure I've taken. When Liz was diagnosed with autism, it was Colby who sat with me. I felt isolated, and he was the only other person in the world who knew my pain.
I feel as if we have lived 1000 lives over the past 10 years. We have moved at least 6 times, lived in 3 states, brought 3 beautiful children into this world, and been through more trials than most people encounter in a lifetime.
I know that this man is the man for me. He loves me, treats me like a queen, and makes sure that I have everything I need. He supports me in all of my advocacy work and even goes with me to protests. He listens to my political ramblings.
Most of all, this man is an amazing father to our children. He loves them. He plays with them. He is patient. I know that he is the best father for my children.
Happy Father's Day, Colby. You are forever my hero.
Thursday, April 9, 2015
Autism Awareness Month 2015
All My Love,
Tuesday, March 31, 2015
60 Miles Of Hope
Thursday, March 26, 2015
Teaching Liz to Advocate
Earlier this month, she made me so proud. She woke up with a horrible stomach ache. She was screaming in pain and couldn't move. I thought for sure her appendix was rupturing. We rushed her to the hospital. As the nurse practiconer looked her over, she introduced herself, and calmly told the NP what was wrong. As I watched her, I realized that while she has a long way to go, she is starting to realize how to advocate for herself.
As she goes through life, I won't always be there to hold her hand through things. My goal for next school year is to help her learn how to better verbalize her concerns and fears to others. I'm so grateful to have an IEP team that fully supports us and our goals for Liz (but more on that later).
Wednesday, March 25, 2015
Sweet and Sassy Presley
Love Always,
Mommy
Tuesday, March 3, 2015
Lizzybug is 6!
Thursday, February 19, 2015
The Person I've Become
First and foremost, I feel that I have become an advocate. I have always been passionate about things that are close to my heart. When I latch onto something I grasp it and hold on as tightly as possible. I have learned how to advocate for others. I have learned to advocate for my children. I know that in some ways I am still getting my toes wet. Often times, I have to step back from the situation before I let my temper get the better of me. I am learning.
Secondly, I have found that I have mostly completed the grieving process that comes with a major diagnosis. I still have my days. Things still sting from time to time. I don't know that this is ever something you completely come to terms with. I think I have just learned how to adjust my life and my way of thinking.
I think that I am more compassionate to those in similar situations. The unfortunate side to this is that I am sometimes bitter to people with typically developing children. I am learning to let things slide. Everything for me seems to be a learning curve.
Next, the hard stuff. Emotionally, I am still sensitive. Random things set me off. I never know when or what it will be. It usually comes at me through the dark. I sometimes cry at night, in bathroom stalls at Walmart, in my car...just wherever it happens. Sometimes it is hard to imagine a life without autism. It's hard to think that I was once of those people who did not know how special needs parents did it. Yet here I am, and autism is very real thing in my life. Sometimes it is this thing that plagues my child, and other times I can see the beauty in it.
I have found that as far as my social life goes, I tend to keep my circle small. It consists of other special needs mothers. These are people who know what I go through. I do not have to fear their judgment. If I laugh hysterically at nothing or if I cry, they will laugh with me, cry with my, be there for me. They help bring a sense of "normal" to my life.
My mentality....this is something that I have struggled with posting. I see myself as unbelievably strong. I tend to be somewhat prideful about my strength. I have a "suck it up" personality. I do not let things lick me. Over the past few months, I have found that life has caught up with me. I have been in survival mode for so very long. My body just could not keep up anymore. I finally let go of my pride, and saw my doctor about anxiety. So here I am on anxiety meds. I am not sure how I feel about it. I struggle with the fact that I have had t resort to medication. I know that is a ridiculous mind set that I need to get over. There is nothing wrong with being on medication. My pride has taken a small beating. I will say that I have seen vast improvement with the medication, and I am beginning to feel like myself again. Many people close to me do not even know this. So surprise to all those who have no clue! As always I am an amazing actress.
So there you have my tell all. This I where I am. This is me right now, and I am learning to be okay with that.
Sunday, February 15, 2015
Standing For Something
We managed to make news throughout the state. Here are some of the links:
MSC News: http://www.mscnews.net/news/index.cfm?nk=46056#.VN6KZXl4gSs.facebook
Friday, January 23, 2015
Explaining Liz
My kids have 5 cousins. They are all 6 and under. They are all very close. My neice is 5, and she and Liz go to kindergarten together. They look after each other. If you ask my neice she will tell you that she and Liz are "a little attached.'' I am so beyond grateful that they have each other. Becase of this, I think that Liz's differences have become more evident to my neice than to other cousins.
Tuesday, January 13, 2015
What Inclusion Did For My Child
Sunday, January 11, 2015
Some Moments Can't Be Captured
About 18 months ago, I attended an autism conference. It was a month after Liz had been diagnosed. I was still very lost and confused. As I walked the hallways, I happened upon an ASD child having a meltdown. One thing that completely struck me was the patience his mother had as she helped him calm the storm. She sat down and held him. She gently rocked back and forth and whispered in his ear. In that moment, I witnessed true, undying love. That moment has stayed with me. As I stood there, an intruder in their world, I saw something beautiful. Just like tonight's snow, it was a moment that was far to beautiful for any camera to capture.
I often find myself wondering why this moment has stayed with me. I'm really not sure. Maybe because it helped me to see that even in the worst storms there is always beauty to be found if we just take the time to see it. Sometimes it takes stepping away and making ourselves the intruders in our own world. When we step back and see the entire picture we may see something that we never expected to see. I'm sure that mom didn't think the moment was beautiful. It was probably something that she does every single day. I'm sure she was stressed and tired, and maybe she was wishing she was in the conference with all the other adults. Yet, there she was.
The reality is that this mother may never know just what a profound impression she left with me. Out of all the speakers I heard, nothing surpassed that one precious moment I witnessed. Being a parent to Lizzybug is one of the hardest most unexpected journeys I have ever been on. I often feel like I am failing or not trying hard enough. I often question my judgement or my parenting, Parenting an ASD kiddo is not an easy thing at all, but for me it has been rewarding. Every accomplishment, every smile, every battle won is worth it. When I step back and see the uncaptured moments I know that like the falling snow it is beautiful.
My poor attempt at capturing the snow:
Saturday, December 27, 2014
Autism and Vacations
- Lots and lots of Lizzybug's favorite snacks.
- Bring comfort items (Liz has to have her "magic blanket")
- DVD Player, Tablet, etc.
- Be prepared for lots of potty breaks (I convinced Liz to wear a pull up and it was a good thing).
- Try to keep the bedtime routine as normal as possible.
- Bring a night light.
- Before bedtime, discuss the schedule for the following day.
- Talk to the hotel and see about the possibility of being on the ground floor and/or being away from others (we have a nosiy household and I wanted to prevent the kids from disrupting others).
- A room with a fridge and a microwave was a neccessity for us as Liz always has to have something to eat before bedtime.
- Liz has to know the time so we also made sure that she always had a view of the alarm clock.
- Unplug the phone; it makes the perfect toy!
- Make sure that you pack plenty of breaks into a busy day.
- Explain the day to them, and answer any questions or concerns that they may have.
- Plan ahead. i,e, If you need to stop for lunch, know the location of autism friendly places to eat.
- Take lots of pictures, and remember to not get discouraged. Make the moments count.
Tuesday, December 23, 2014
Life is Fleeting
This is our sixth Christmas as parents. We now have 3 kids. I remember Liz's first Christmas. She was 10 months, and Colby and I sat eagerly under the tree as we assisted her in opening her gifts. We were so excited to share that with her. This year we will do the same with Brody. It's hard to believe we have had 6 beautiful Christmases with children. As Brody is likely our last baby, I'm trying to make an effort to just pause and enjoy the beauty of the moments.
Sometimes pausing means waking him up at 3 AM to smother him in kisses. It means midnight checks on the girls, and stopping whatever task I'm busy with to read them a book. When all is said and done my children won't remember the clean immaculate house, they will remember that mom read to them, laughed with them, and dreamed with them.
Life is fleeting. We blink and it's 6 years later. I want to live every beautiful precious moment. I want to smell the newness of Brody's head and cuddle with my 2 precious girls. I want them to say that their mom lived and loved. That she made a difference somewhere, somehow. I want them to tell people that their mom helped them dream. This life is short. Every second we breath is a miracle. Every sunset and sunrise is a blessing. We need to cherish those we hold dear and remember to pause and enjoy every single moment. So this Christmas hold your little ones near, take their pictures, smell their heads, and tell them that you love them.
Tuesday, December 16, 2014
He Prepared Me
I think of The Bible, and the way that many of the prophets were preapared for things that happened to them. We all know the story of Noah, and how he prepared by building an ark. I have found that every time a new curve ball comes my way I am prepared. It happens in ways that I would never expect. As a teenager, I never would have dreamed that I would have a child on the spectrum. Yet, that love for those on the spectrum was placed in my heart. As I have started to advocate, I look back on seemingly unrelated experiences and realize that I was being prepared. For example, my husband was hospitalized for a time. As he sat unconscious and barely clinging to life I advocated for him. I never would have imagined what that would lead to.
When we recieved this diagnosis I was angry with God. I could not figure out why he would put this on my shoulders. All I could focus on was the present and my own feelings. As I gradually stepped back and looked at the larger picture I realized how miraclous it all is. Everything fits. I can truly see Heavenly father's hand in every small detail. When I feel like I just can not do it anymore I try to take a deep breath, have faith, and remember that he is preparing me for something larger than I can comprehend. His work is beautiful. He has a hand in our lives, and he knows each of us. He knows our pain. He knows our struggles. He knows our worth. All he requires of us is to put our faith in him. If we can do that we can find peace and hope no matter how dark life seems. I know that with all of my heart.
To those that are struggling, please be strong and have faith. You are being prepared for miracles. It may seem hard, and you may feel like giving up, but push on a little further.
Sunday, December 14, 2014
Patterns
Saturday, December 6, 2014
An Update
We also have a bully at school, and she is making life difficult for Liz. It seems that Liz isn't the only kid she is picking on. We have been working with Liz on not letting this girl's opion knock her down. We want her to know that her opinion of herself is the only one that matters. The most difficult thing has been trying to get her to report the problem to the teacher. It's a hard concept for her to understand. Thankfully, her teacher has taken this issue very seriously.
Liz is doing much better with her sight words, We know way more than we did just a few weeks ago. We have been slowly working on one sight word at a time, and then reciting the ones that we already know. Reading seems to be a weak spot for Liz. I think she prefers math.
Overall, Liz is beginning to readjust to our life. She is eagerly awaiting Christmas and Christmas break.
Tuesday, October 21, 2014
Van Wagoners in St.Louis
We have been given the opportunity to enter Brody into a sibling study in St.Louis. We just made our first trip. I am beyond excited about this study. This is a huge study that could lead to earlier diagnoses for millions of children. Over the past year, this is something that I have become passionate about. Liz had a late diagnosis. I can't help but wonder if our road would have been easier had she gotten that dx earlier. It has been proven that the earlier you are able to seek intervention services and therapies, the better chance that child has at being successful. What if we could diagnose a child with ASD at 6 months? Think of the possibilities and advantages. Parents could begin seeking treatments before the child was a year! I am excited to begin a 3 year journey with these people. I am excited to make a difference in the future of other children and families.
Wednesday, October 15, 2014
The Minutes That Lasted A Lifetime
It's been over a year since our diagnosis, and I still remember sitting in the waiting area after Liz's test. We sat there waiting while a group of professionals determined whether or not our child had autism, whether or not our lives would change forever. That was the longest half hour of my life.
I recall walking over and grabbing a few brochures to read. Brochures about new studies, support groups, and genetic testing. I paced the floor and wrung my hands.
In those moments, I knew deep down what the results would be. Over the past 3 months, I had read every piece of literature available to me. By this point, I had battled the school, myself, and God. I knew what I didn't want to believe.
Then, they called us in. You know that feeling you get on a roller coaster when your stomach drops? That's what I felt. I wish I had realized then that this diagnoses was not some doomsday event for my family. This diagnosis would lead me forward. It would teach me to advocate for my child and for others like her. It would lead me to begin a support group in my area. It would lead me to an amazing group of women who have become some of my greatest friends. It would teach me hope. It would teach me patience. But most of all it would teach me love.
Saturday, September 13, 2014
It's Never to Early to Think About Time Change
There are 2 days a year that I dread, the day daylight savings time begins and the day it ends. It can literally take weeks for Liz to adjust. I'm the past, I have dealt with 3 and 4 AM wakeups until the time changes back several months later. I can be exhausting.
This time I'm fighting back! We are roughly 7 weeks away from falling back. I plan to move Liz's bedtime back 5 minutes each week. Then we have a week to adjust before the change even hits.
I'm also planning to invest in a toddler alarm clock that changes colors to let her know when it is ok to get out of bed.
I have high hopes that one of these methods will work! Otherwise, I will be available to talk at 3 or 4 AM starting November 2.




