Friday, June 13, 2014

Sharing our story

Yesterday I took a big leap; I let my guard down and allowed everyone in my circle (and some strangers) to have a glimpse into my life through my blog. I didn't realize what a scary and rewarding experience this would be for me. It felt like I accidentally left my journal laying out and it was up for grabs. In that moment anyone that wanted to take a peek at my life now had the ability. I finished the day with over 700 views and some amazing comments and private messages from friends and family. I have now made connections with other friends who have children on the spectrum (that I didn't know about) and I have helped people understand what a day in the life of the Altenburger house can look like in a typical week.

Last year, I slowly started writing posts again on my blog after Gavin was diagnosed. I was mostly doing it as my own therapy. I wanted to be able to have an outlet to share with people what I was feeling, but also to be able to look back and reflect on some of these moments. I would often tell Doug what I blogged about, but that is pretty much where the sharing ended. A few friends would read my blog because I had mentioned it to them or they still had my web address from long ago. Last week as I was telling Doug about wanting to blog about Gavin's routine and we both realized it was time to share my entries with more than just a limited audience.

My goal is still the same, to use this platform as my therapy. Writing helps me process what I'm going through and it serves as my memory bank when I'm too exhausted to store all of this in my head! I hope that people will continue to follow my posts and find answers to some of their own questions or just be there to join us and support us on this very real journey we are on in the World of Autism!

One of my favorite earlier posts, was about a story by an author named, Emily Kingsley, called Italy. If you have not had a chance to dig through my blog and find it, I encourage you to click on the link above. I stumbled across this story when Gavin was first diagnosed. It perfectly describes what life is like when you learn your child has a disability. Many of you complimented me, yesterday, on being willing to change my way of thinking for Gavin, but I look at it as the only choice. I love my children beyond words and being their advocate and their support is the reason I am blessed to be their mom.




Monday, June 09, 2014

It's time to see the world through Gavin's eyes

Many people ask me about Gavin's biggest struggle. However, I realized recently that I have been answering with my biggest struggle with Gavin. I have consistently told people that it is tough that he is still non-verbal. Upon reflection though this isn't really frustrating for Gavin, anymore. He has learned how to communicate with us through sign language, communication boards, and gestures. He even has about 20 word approximations that we as family members understand. He doesn't appear to get as frustrated, because he has discovered his own resources to try and communicate with us.

What frustrates him is when we try to change his routine. Gavin is used to things being a certain way on a typical schedule, and deviating from that really doesn't make sense to him. A couple of weeks ago I had a battle with him to try and wear new shoes. Now this is a battle we had experienced before but I thought this time I would win. I bought him the exact same grey converse that he had been wearing for the past three months. In fact, I bought several pairs of this shoe in varying sizes so that we could avoid the tantrums in the future.

The joke was on me though. Gavin noticed the only difference in these shoes right away...they were new and clean!!!  He through a fit and refused to put on the new shoes. We finally left the house with just his socks on his feet and his shoes in my hands. When it was time to get out of the car at our destination he still refused to put the shoes on. We sat in the car for an extra fifteen minutes before I finally got the shoes on him. I thought I had finally won, he will love these new shoes and quickly forget these are not his every day pair. Instead, when we got home he ripped off the new shoes, found his old shoes, brought them over to me, and requested that I put them on him. Operation new shoes = failure.



Last week, as the temperatures were finally starting to increase, I took on my next battle with Gavin...shorts. After one kick to the face and one to the stomach, I finally got him in the shorts. He sat in the middle of the room for about five minutes (it felt like 5 hours) and cried. I finally held him in my lap, rubbed his back, and pulled out some trains to distract him. By the time I left for work he seemed like his normal self. About two hours later I received a message from his nanny that he was very angry that day. He was kicking people and items and didn't want to engage in activities. This didn't sound anything like my happy boy.

I told his nanny to grab a pair of pants from his room and show them to him. She said once she gave him the option of wearing them he instantly gave the sign for "me". She quickly put the pants on him and within seconds his demeanor changed. He calmed down and started to snuggle her during his break. No more kicking or fighting.


I have been very aware of Gavin's sensory issues for awhile now. For instance I know he can't wear shirts with tags, he strongly dislikes polos or button up shirts, jeans, pants that make swishing sounds, and other items. I have respected all of those boundaries because there was no sense in making him uncomfortable, but for weather appropriate clothes I pushed. I pushed and I should have been listening. I was telling myself that he was miserable in pants in the heat, but the reality is he was miserable in shorts. He is also uncomfortable in sandals/flip flops. These items are not a part of his routine and I am taking his little bit of control away. 

I realized last week, that if the change is absolutely unnecessary, then I need to listen to Gavin. I need to be more understanding of Gavin and stop trying so hard to have him conform to our standards. I need to start seeing and feeling the world through Gavin and stop trying to make him see it from my point of view. He's already taught me so much, I have no reason to resist him on his vision.