Wednesday, September 04, 2013

The "A" Word

As a parent, there are several things you never want to hear about your child. At the top of that list, hearing that your son or daughter is sick or ill. I will never be able to forget the afternoon I sat in my living room listening to my son's Early Intervention therapist list off the multiple red flags she saw for our 19 month old son on the Autism Spectrum.

A million thoughts began to flood my head. How could this possibly be right? How did we miss these signs? I immediately came up with my own answer that this simply couldn't be right. Clearly he's just delayed in speech. Most boys talk late, right?!

I kept hearing her say, that she couldn't diagnose Autism, but it was definitely her recommendation that we get him checked out. She explained that it was a three step process, but it was great how early we were catching this for him. I left that appointment confused, overwhelmed, and ready to disprove everything she just said.

Thus began a two and half month long process of waiting for his evaluation to take place and starting to question everything our son did on a daily basis. One day I bought him new shoes and he threw a fit.... Was this a sign of Autism? The next day he bit his sister...is this toddler related? Nothing made sense and no one had an answer that was consistent.  I slowly felt myself losing it and just praying that we could get an answer. However, on August 13, 2013, my life changed forever. The word Autism was officially associated with our son. In that moment I wanted to take every prior thought back. I didn't need an answer...not if this is the label that would now be linked to him.

The days ahead became, if at all possible, even more overwhelming. His diagnosis came with a recommendation of 20 hours of therapy a week. However, after three weeks of trying, I couldn't get a single agency to take my calls or to even bother to call me back.

Now, as more hours, days, and weeks pass I wonder if we will ever get him the care he needs on top of trying to figure out what all of this means. We made the difficult decision to pull him out of daycare. With that decision came the frantic search to find a nanny to care for him....ultimately having to hire three different people to cover the week! With each passing day it feels like more and more hits keep coming. I know that I need to tell myself to step back, take a deep breath, and maybe even cry a little until this whole therapy situation sorts itself out, but it is so difficult. 

When I started this blog many years ago I appropriately titled it My Journey...My Life. I am returning to the blogosphere again to share this new journey with all of you. It will hopefully serve as my memories and a resource for family and friends about what is going on with us when we don't have the actual ability to talk about it out loud.