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Wednesday, November 20, 2013 View Comments

This is a guest post from blogger Chrissy Kelly (Life with Greyson) about the emotions surrounding her son's autism diagnosis.

Autism didn't come at me all at once. It snuck up on me, in little bits and pieces. Fear would breeze through me in moments, leaving nothing concrete to hold on to. Other moments I felt paranoid, like I was overreacting to the subtle differences displayed in my then two year-old little boy. Nothing was black and white; for many months the world took on a cold shade of gray. 

We were knee deep in evaluations and screenings, beginning Speech Therapy and Developmental preschool, slogging through an endless supply of confusion, paperwork and appointments. Lost

People I always trusted to give me answers couldn't tell me what to do or where to start: Our pediatrician, other parents, research. God. I didn't know where to go. 

And ever so slowly and yet quickly all at once, the puzzle pieces fell into place. And one day I knew what it was called and there was no going back: My son Greyson had Autism. 

And then came the grief. Oh the grief that could fill buckets and volumes of books and still not even touch on the surface of the confusion and sadness and pain. The pain that colored everything. I didn't care about food or love or laughing or life. I didn't even care that I didn't care anymore. All I wanted to do was sleep. I couldn't think without crying. I couldn't think about the present; it felt like a nightmare. I couldn't think about the future; it brought me to my knees with fear and uncertainty. And the past was unbearable. All I could envision was my brand new baby boy placed into my arms on the day of his birth. They counted ten fingers and toes. They told me he was healthy. I believed them. And somehow between then and now, I let him down. I was supposed to protect him from everything, and I failed. My confidence was crushed in my ability to be a good Mother. 

I desperately needed someone to tell me exactly where to start. I needed to know exactly what I needed to do to make this better. I needed someone to show me Go

The vast variety of resources available added to my feeling of inability. There was so much information out there, some of which was conflicting. So many therapies promising to be THE cure. But if that were the case, wouldn't the world already know about it? People told me, Trust your gut instinct- but I already did that-and look where it got me. I realized my gut instinct was most likely broken or missing. I needed to talk to someone who had walked this path before me. Someone with a similar story who felt like my kind of people. A person I could talk to - not necessarily about treatment specifics, but about life, from the particular angle and perspective that autism brings into your world.

I needed someone to help me restore my faith in me - so I could be the Mom my son so desperately needed and deserved. If I could make me okay, then I would be able to take care of my sweet son.

It's been almost two years now since Greyson was diagnosed. I have learned that there is no universal Go, because it's different for everyone. There is no one size fits all when it comes to autism. Resources in every city, in every state differ greatly. The level of development, and therefore needs, varies for each child. 

For us, the most important elements in our treatment of autism haven't been special diets, or Behavior Therapy or Speech Therapy - although all of those components have been extremely essential. One of our most important components has been perspective - a willingness to try 100 things, knowing that 99 of them may fail but hopeful that the one that works will be a home run. An acceptance that this is exactly the life we are supposed to live. One huge resource we all have, regardless of our circumstances, is each other. We are a community of people that all believe in the same thing: Helping the people we love live the best life possible.

If you are newly walking this path alongside me, I want to tell you something: You can do this, I promise. Everything good in life is worth fighting like hell for. You will find your path, your protocol, the best treatment for your child. You will find your way. It's hard work, numbingly hard and complex and sometimes scary and constantly changing. But it's sacred work, too, filled with purpose and passion.  You are going to have to unlearn a lot of what you thought you knew about parenting. You will learn a whole new language and set of rules. Your child will teach you more than you need to teach them - big things about mankind and goodness and kindness in the world. 

We are so very grateful to have the gift of perspective that autism brings. We are so very blessed to have both of our sons- exactly the way they are. They are a gift we don't take for granted. One day after I had authentically and slowly traveled through stages or grief, I felt it. My gut instinct. It was still in there. I was shocked it survived the crash. I promise you will survive, too.