Closing Out Autism Awareness Month

This month I have spent a lot of time thinking about where we are now compared to a year ago. A year ago, we were still waiting on an appointment for a diagnosis. I felt like everything was falling apart. We were afraid of the uncertainty. Monday, Liz had a well visit. Her doctor was amazed at how far she had come just since October. Liz is offically in the 10th percentile (the highest we ever been) for weight! She has also grown 1.5 inches since October. Her doctor was amazed at how much her speech and behaviour had progressed in that time period.
I know sometimes it is harder for my husband and I to notice improvement because we are around her all the time, but I do know she has taken some major steps the last few months. I am so proud of everything that she has done to move forward. A lot of work and tears have gone into getting her where she is, but she is getting so much closer to where she needs to be.
Even though April is ending my family will continue to raise awareness all year long. Autism never sleeps in this house. We will continue to teach others how to lovingly accept our child. I am so glad we had the chance to "Light it up Blue" this month.

Kindergarten Roundup Tomorrow!

Tomorrow we will be registring Bug for school. She is so excited. A few weeks ago we had our transition IEP meeting, and I was really pleased with what they have put together. Liz will have para in the classroom for all of her core classes. She will be pulled out for a half hour of reading and a half hour of math. During that time they will prep her for her skills that she will learn the next day in class. She will also have 20 minute speech sessions 4 days a week. She is exempt from all state testing, and she will be pulled out and read any tests if she needs it.

I don't think we could have asked for a better IEP! I was really impressed. There wasn't much that I felt like I needed to question. It's probably her best IEP yet. It made me feel much better about the transition next year. I feel like they are doing a good job of offering her proper supports.

Tomorrow will be her second tour of the school. I am glad that she's been able to see it multiple times. She realzies she's going to the "Big Kid School" next year. She knows she will have new teachers and that there will be new kids. She is really excited for that.

I just wish I knew if we were going to be living in this school district next year. That's the one thing about our situation that stinks. That's questionable right now. Hopefully we will know soon so we can really start to prep her. 

SOS Diet Final Update

I got so caught up with Autism Awareness Month that I completely forgot to continue updating. After 2 weeks on the SOS Diet Liz ate mashed potatoes, something she had formerly liked and chosen to remove from her diet. It was just a few bites, but it was awesome! She also has been much better about not grazing (as long as I remember to have our assigned snack times). I feel like the biggest benefit for us was having a set schedule for meals (including snacks). Our behavioral therapist had also suggested moving our larger meal to lunch time, and they made a huge difference in how she ate. Because my husband works nights, this actually fits our schedule better. So would I recommend it? Yes, absolutely. It was a lot of work, but we saw results.

The Day My Life Forever Changed

On June 27, 2013, my husband and I walked into a clinic with our oldest daughter. We had no idea that when we left our lives would be forever changed. We knew autism was on the table. Unfortunately, no amount of homework prepares you to hear those words, "Mr. And Mrs. Van Wagoner, I don't know how much you know about autism, but that is the diagnosis we are giving your daughter today." Those words are forever ingrained on my soul.

I remember the emotions. The relief of finally knowing what was wrong, the fear of the unknown, and confusion about what to do now. We felt so overwhelmed. We felt so lost. So many questions began to run through our heads. What do we do now? Where do we go for help? What will her future be like?

Over the next several months, I was angry with God. How could he do this to my family? Why us? Hadn't we had our own fair share of trials? Give it to someone else! I stopped talking to God. I did the only thing I knew how to do, I ran. I ran mile after mile, as if by some miracle each mile would take a little of the autism away.

Then one day, I had a startling revelation, this wasn't about me. This wasn't about my husband. This was about Liz. I sat there, and I envisioned her sitting with a loving Heavenly Father before she came here. I envisioned him explaining to her that she would walk this world with this obstacle. I imagined him telling her that she would not walk this path alone. He would be there, her earthly parents would be there, she would build a village of supporters, and she would be blessed. I saw Liz agreeing to this plan. It hit me like a brick. She agreed to this. She knew her path. She was willing to take it all on. And if she was willing to do that, I needed to do it,too. I needed to accept it.

Obviously, I have no idea how things played out in what we Mormons refer to as the pre existence (belief we existed before we came to Earth), but I like to think Heavenly Father was open with us about what we would face on this earth.

I still struggle sometimes. I still have days where I'm not sure I can make it another day. I still cry. I still question myself. One thing I have stopped doing is questioning Heavenly Father. I have come to realize and accept that this is his plan, and I need to embrace this. The diagnosis didn't change who my daughter was. It opened up a new world for her and for us. The way our life was forever changed was for the better. The past several months have been absolutely beautiful. I have watched my daughter learn and grow. I have watched her mind expand as she experiences therapy. I have had my heart touched over and over again. I have felt my faith in a loving Heavenly Father grow. I have been driven to my knees in thankfulness. I have watched my family grow closer together. I have new friends. I have built a village. I have learned that no matter how alone we may feel, we are never alone. I have learned life never turns out how we expect.

All of this is beautiful. Every second I have with my daughter is a gift. Every word she speaks, every puzzle she assembles, all of it is absolutely beautiful. I will never forget the most remarkable, life changing, beautiful words ever spoken to me,"Mr. And Mrs. Van Wagoner, I don't know how much you know about autism, but that is the diagnosis we are giving your daughter today." This life is ours to embrace, this diagnosis is ours to embrace. Love every minute and it will be worth it. Because of ASD I have been blessed beyond measure. 

Thank you, Bug, for teaching me to live.

An Invitation

Today new numbers were released. Autism is now up 30% to 1 in 68. These numbers are incredibly high. In 2012 the numbers were 1 in 88. The rate has continued to increase over time. My biggest concern is that we do not have enough resources for all these children being diagnosed. And what about when the kids become adults? Who is going to take care of those who needs constant care? What are these kids going to do for work? Are colleges going to be equipped for them? These are questions that WE have to bring attention to. I am just one mom, but I know that I can make a difference. If everyone would come together, and raise their voice, call attention to this issue, then we could all make a much bigger difference.

I know people thing autism awareness is silly because they think everyone knows about autism. They may know that autism exist, but they may not know how many kids it affects, how it affects them, or even that there's a significant lack of resources. When Bug was diagnosed, I knew what autism was, but I had no clue how scarce the resources were until I was thrown into that situation. Suddenly, I was facing an uncertain future for my daughter, and I did not know what to do. It wasn't until I began reaching out to people who knew that I found resources.

Which leads me to another pressing issue. We wasted months after we got her diagnosis. Precious months that we will never get back. Why? Because I had no clue what to do after her diagnosis. I didn't know where to go for treatment. I didn't know that occupational therapy would be beneficial for. I was completely clueless. We need to make an effort to fill the gap between diagnosis and treatment. That gap is time that we can never get back, time she could have been getting treatment.

Don't even get me started on insurance coverage. So many ASD families are paying for treatment completely out of pocket because it is not required to be covered. So many families mortgage their homes, take up second jobs, and sell things just to give their child the best chance that they possibly can.

So I am asking everyone to Light It Up Blue next month. Out out your Christmas Lights, change your porch light, change your profile picture on facebook, do whatever it takes. These kids (and adults) need us to all come together to raise awareness. If we don't do it, who will? I have only listed a few reasons why this is so important. I could go on. Please take up my invitation. I will be posting pictures next month of my home and any others who email me pictures, and take up our invitation. If you don't feel comfortable posting a photo of your home how about a photo of your family in blue? Your dog in blue? Be creative, and help me raise awareness.

                                                   And who can say no to these cute faces?

Day 3 and 4

I am still staying pretty full. The kids seem to be as well. Today (Day 4) Liz didn't eat a ton. I am wondering if she is coming down with something. Even some of her favorite snacks she skimped on. Poor girl. Presley seems to be doing better about eating, and this morning she even insisted on eating her breakfast at the "big table" instead of the kids' table. I am really loving sitting down with the girls for all their meals. I have made a point to put my technology away, and just talk with them. So far I am pretty pleased with the results of the SOS. Liz seems to be branching out and trying new things.

SOS Day 2

Yesterday was a little harder for me, mainly because I had a headache. Liz did really well though. It has actually been harder for our youngest. One thing I have noticed is that we have all pretty much stopped grazing. I've been a grazer my entire life, unable to ever really feel full. Sitting down for assigned snack times has done wonders for all of us. One thing I will do for next week is get a menu from the school as some of my things have overlapped with theirs. I should have done that to begin with.