January 7, 2013

unnamedI was cleaning out drawers the other day and found all my old journals. I had started this new blog not sure of the direction I wanted it to go…then I read my very first journal entry (below) from January 7, 2013 and I knew. HOPE!

We both knew, in the back of our minds, it was more than just “developmental delays” or “speech delays.” As much as I had Googled and read online, I knew all the red flags and warning signs to look for, which is why I had scheduled a visit with a developmental pediatrician at Vanderbilt. But it still didn’t make that visit on December 4, 2012 any easier.

I was a nervous wreck, sick to my stomach. I was nervous for little Chase and how he would feel and act during that three to four hour appointment. I was nervous about the outcome, the answer to all our questions, prayers, fears…the impending diagnosis for Chase’s regression and delays.

I hate the label and all the judgement and misunderstanding that goes along with it. As we pulled away from Vanderbilt that day, we decided not to tell anyone about the Autism diagnosis unless necessary. People just wouldn’t get it. I certainly didn’t, until I was forced to learn. It’s such a complex disorder, and our only comfort, at that point, was that we had already contacted TEIS and begun different therapies to help Chase in early intervention. He was two and half at this point. Almost all of the doctors’ recommendations were already in place, except for implementing ABA Therapy.

My husband, Chase’s, first comment once we were back in the car was “We can’t say in Jackson.” There aren’t enough resources and adequate services that will help Chase. And he was right, but it was not an avenue I wanted to explore at that point. I was still processing the diagnosis and trying to figure out what was next.

The next few weeks leading in to Christmas were consumed with getting Chase into every therapy he needed, getting him adjusted to a new school (Therapy and Learning Center), and making sure that every possible thing that was available in Jackson was being done. I still hadn’t really taken the time to process how I actually felt because my days were consumed with schedules, therapies, Miles…and in between all of that, more research online.

I just wanted to get through the holidays this year without having a complete and total meltdown. I wanted to hold my breath and for it all to go away. I wanted my healthy, happy baby boy back.

It was hard to be around family and friends with this “secret diagnosis” looming overhead. Once school started back and our weekly routine resumed it finally hit me…AUTISM!

The last week has been the hardest week for me, emotionally, since we left Vanderbilt on December 4. I guess after 2 months of therapies, working with Chase at home and a new school, it has finally sunken in that this is going to be a long, slow process of healing.

I am the type of person who wants quick and instant results and will do anything in my power to get them, but it won’t work this time. The power and control are out of my hands. I am realizing that the smallest of improvements are the biggest victories. I see change and progress daily with Chase; and while most people would take these for granted, or maybe not even notice, we are jumping for joy over the small things.

Chase may not speak, and he may not know how to play appropriately with toys or his brother, but he is the smartest, sweetest, most loving two year old I know and he has already taught us so much! I know God has big big plans for little Chase and will use him and us to help so many people down the road – that is my hope!

We are going into this whole diagnosis so blindly and with very little guidance, help or resources…I hope one day we can be mentors or help to other families on this journey, or at the very least provide hope and encouragement along the way.

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