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!

A Product Review

Liz hates having her hair washed. It's actually a pretty traumatic experience for her. I'm pretty sure it's all sensory. Poor girl also has curly hair that tangles easily.  So I recently discovered a product sold by Sage Products that allows you to wash and condition hair without water. It looks like a shower cap.
The steps were simple. I stuck it in the microwave for a few seconds, so that it wasn't cold. Then, my sister and I massaged it in for a good 2 or 3 minutes.  Because Liz has curly hair we let it stay on in a few more minutes.
The final result was, her hair did in fact look like it had been washed. It did not condition as well as I would have liked (then again Liz gets huge tangles so easily) but we solved that with a wide tooth comb and some detangler. Liz wasn't thrilled about the cap being on her head, but she did not scream about it. It was a little large because it only comes in adult sizes. The price is also a bit high for regular use (there's only one per package).
Will I order them again? Probably.  Anything to make our lives a little easier!

You can find the product here: http://shop.sageproducts.com/comfort-rinse-free-shampoo-cap-p14.aspx

2 Weeks In The Trenches

Two weeks of school down.  I've already sent several emails to the school. I feel like everything is a battle.  I just want my child to succeed. Am I asking that much? Liz does seem to be enjoying school though.  She's also making friends! 

I know it had been a hard transition for her though. It all comes out when she gets off the bus.   It comes out when she feels safe and loved, at Papa and Nana's home and at our house.  Those are the places where she knows she's surrounded by people who love her and care about her, people who will take her as she is.

It's been a rough few weeks. I am so proud of Liz though.  She has gone out and made friends, had mostly good behavior in school,  and seems to be keeping up with the rest of the class.

I have high hopes that over the next few weeks we will be able to iron out everything with the school.  Until then, I'm trying to take deep breaths and counting to 10 repeatedly.  Trying to not let these past few weeks break my faith in the system. I guess you could say I'm just hanging in there. 

First Day Part 2

I was so excited to get Liz off the bus, but it was not what I had expected or hoped for. I had hoped she would come inside and tell me all about her day. Instead, she got off the bus and angrily threw her things down, refusing to talk. I was pretty emotional. I stepped away for a second and slid down onto the floor, buried my head in my hands, and I cried. I cried more at that moment than I had cried all day. Most children come home from their first day and excitedly spill all the details of what they did. My child could not even tell me if she had a good day or not.
It is in these times that I'm so grateful to have my husband. He understands that sometimes autism is just hard. Just knowing he was there to reach out and give me a hug made all the difference. The remarkable thing about having a child with a disability is the insane amount of teamwork spouses have to give. We are a team. We are there to tell the other that it is okay. I really do not know how I could do this alone.
After awhile, Liz calmed down enough to have a snack. That seemed to help her cheer up some. I never did get a lot of details out of her. She told me she liked her teacher and that was about it.
Today when she came home, it was pretty much the same story. I am hoping that as she adjusts things will get easier. For now I am trying to stay strong and roll with the punches.