Friday, October 26, 2012


After finding out about Carter, I would say I fell into the proverbial slump. It took approximately 4 days for me to cycle through my emotions, and feelings regarding our new "normal" as my friend Liz would say. I have been told to mourn the loss of my child's future, to let go of my hopes and dreams for him. At first I fell for it. And then I got to thinking.

Why would I let got of my hopes and dreams for my child? Why would I mourn a child that I have right here, living and breathing in front of me? Perhaps his immediate future will not have the same expectations I carried when I first found out I was pregnant with him. But by all means, I will leave these hopes and dreams in tack. I want Carter to have the future that he desires, not what I desire. If he wants to study the art of brush strokes, then so be it. If he would like to become a quarter back, alright. If he has intentions of becoming a nuclear physicist, go for it!

So with my 'mourning period' cut short, I got to researching. Ed and I have been pouring over books and blogs, websites that contain helpful information regarding Carter's mental capacities. We are blown away at what some of these kids have accomplished and continue to do.  Ed and I began to pray. Every night we have prayed for guidance, strength and to help us weed through this mass amount of information available to us. The impossible is this:

Where in the world do you begin?

As most good parents would do, we are going in for a second opinion. Beyond that, where? Where do you go and what do you do? There are so many schools and decisions to make from there. We also have the course of therapy? Which sort of therapy does Carter need? What is recommended?

Again. Who knows?

I had a particularly bad day this week. After multiple days of Carter being over stimulated and not being able to settle down for a nap, Carter had taken a dive with his ability to listen, to respond, to sit still to eat. He would run back in forth in the room, he fought us to eat, he would melt in a puddle of frustration in the middle of the floor. It was exhausting. We had been awake for no less than 2 hours and already he had been in time out 3 times. Lincoln is teething and was screaming in my ear for 1 1/2 of those hours. I called Ed.

"Come home."

And he did. (I have an amazing and patient husband.)

I told my friend T about this particular melt down and lack of being able to handle things. She referred me to a blog with a particularly well written post about this exact thing. Something you need to understand: For me to melt down on my son, grab him firmly and shut him in his room, makes me feel like a horrible parent. Knowing that I am so close to losing it on my kids that someone will get hurt if I don't get rescued is scary. I understand other mom's can feel this way, but for me its not acceptable. Obviously I need to cut me some slack. So after reading this blog I was finally able to breath a sigh of relief. There are other Mom's JUST LIKE ME. This is an empowering statement. I have felt alone in this since finding out about Carter. Many people have said to me, "WE are going to get through this. We are going to get Carter the help he needs. We can do this." Just for the record? No, we won't be. Because its "I will get through this. I will get Carter the help he needs, and the we? Its Ed and I. No one else."
For the record, please do not be offended when I correct you. For friends and family, most of you haven't had to encounter anything like this. So finding the right words can be difficult. I get it. We are still sorting through our feelings and thoughts on this so we ask this: Please be sensitive. At least if you want us to be talking to you over the holidays ;).
Back to my story. I read this blog and immediately I wanted what this writer has. Not her insanely busy life. But I want the support group that she has. So many women seek out her support and her guidance. I want that support group, without going to a support group. With a deep breath, I did what I felt I needed to do in the moment. I felt incredibly nervous, silly, and down right stalker-ish... I sent her a friend request on Facebook.
I have never done something like that. But I felt immediately like I needed to. Even though it brought on a mini panic attack, I felt like I needed to follow this through. So I sent it. 24 hrs later, she accepted. I immediately sent her a private message explaining our situation and explaining I felt like I needed this support group and hoping she could help me with that. And I sent it. Just like that. Once again. So not like me.
I received a message immediately back from her saying not a problem and in the early months its this support group of fellow mothers of autistic children that get us through this rough time. She then asked me some questions about Carter and about our plans. Within a matter of minutes she had me organized in what my plan of action needed to be and had emailed me a list of questions with billing codes and procedure codes that I could quiz down the insurance company to find out what is covered and how much help we could plan on receiving. In the words of my wise 3 year old:


This is exactly what Ed and I have been praying for. To the detail. For one of the few times in my life I recognized the dramatic power of prayer.  I am grateful beyond words that I followed this prompting. Where I was floundering and unsure of where I needed to make my next move, one person who has been through the ringer to help her child was able to cut down all of fluff and put all my worries and concerns at rest.

This world is full of networks, connections and invisible ties to each other. You never know how one simple thing such as recommending a blog post to read to comfort a friend can alter the outcome for that friend.

A special thanks T.

1 comment:

Jullee said...

I'm glad you are finding resources to help you as you go. I don't remember if you are friends with Hilary Burton from high school...but her little brother has a pretty severe form of Autism. They moved from CA to UT in 97 in order for their son to go to the Training school in AF. You may want to reach out to her and see what steps her family took in working with him and his Autism. He is in his early 20's now and doing very well.