He Prepared Me

I have spoken before about how Heavenly Father prepared me at an early age to be an ASD mom and advocate. As a teenager, I spent hours researching autism and the benefits of dance therapy. I was like a sponge. Before Liz was even diagnosed, I enrolled her in a dance class. I knew in the pit of my stomach that she had autism, and suddenly all the research that I had once absorbed came back to me. I often wonder how different this journey would have been if I had not been prepared early.

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.

Patterns

Last year Liz began to recognize patterns on paper. I was so proud the day she came home, pointed at figures on a sheet of paper and then told me that it was a pattern.  This year,  Liz has started to comprehend patterns in her daily life. The good thing about this is that she able to verbalize that she likes patterns.  The bad part is that she demands these patterns. Our life has turned into a series patterns. For example,  she enjoys her school lunches to move in a pattern (one day she brings lunch, the next day she ears school lunch, then she brings lunch, and etc.). If anything changes she lets us know that she is "so angry" because we aren't "making a pattern. " Don't even try to tell her you are making a new pattern.  The outcome is not a good one! So here we are the always unpredictable Van Wagoners living a life of patterns. 

An Update

It's been awhile since I have blogged. We had to leave to Utah for 3 weeks due to a family emergency. It's crazy what 3 weeks away from home can do to an ASD child. Transitioning back to "normal" has been difficult for Liz. She hasn't wanted to go to school. She wants to stay home with us.
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.

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. 

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.

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.

Don't Fear the Label, Embrace It!

It's 2014,  and we still live in a society that fears "labels." Instead of viewing labels as a way to better understand a person, we see labels as something bad. In reality,  labels help us unlock potential in those who possess them. It wasn't until Liz began OT that I truly saw how incredible her mind was. Her label unlocked OT for us.

I won't lie.  After we received our referral to have Liz evaluated for autism, it took me a few months to even call and make the appointment.  I struggled with accepting that something could be wrong with my child. One day, I realized my child was not happy,  and neither was I. That was a major turning point for me. I realized I had to do something. 

To all the parents out there who know something is off, but you aren't sure whether you want to label your child, I promise it will be the best thing you ever do for your child. Don't be scared of the label. You will soon realize what a remarkable and amazing thing that label is. It will open up so many doors for your child.  It will make things easier for you. Just take the leap and do it!