Sorry we have to cancel...

Today I woke up excited for a couple of reasons. One being that it is the last day in a 16 days stretch that I have to work, but the second, and more important reason, that I was finally going to meet with an Autism specialist from Boston Medical Center to tell me about all the resources in the area.

My appointment was scheduled for 9:30am and at 9:15am I received a call letting me know that unfortunately she wouldn't be able to make it today and she would need to reschedule. This appointment took two weeks to set up and we are now 25 days out from learning about his diagnosis. We have had little to no success; this was my one glimmer of hope that things were finally going to start to come together.

It's moments like this that I just want to scream out in frustration. I am trying to be so strong and handle of this with grace, but I also just want to help my son. The day we received the diagnosis the doctor told us how great it was that they were able to discover this so early because the resources at his age would be able to do so much for him. Right now it feels like none of these services will ever start so all we did was catch it early with no support.

Trying to channeling good thoughts to turn this negative situation into a positive one. 

Italy

A week before we received Gavin's diagnosis I found this beautiful story, by Emily Kingsley. It really puts everything into a perfect perspective.

My Trip to Holland 


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandt's.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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.