Strange Sense of Awe!

I realize that I have already posted a blog entry for today but I felt the urgent need to post about my experience. I will call it my moment of awe. My friend Brandi recently informed me that she was going to start using her cafemom account again. I told her that I would start using mine again, thinking that it would be a much better resource for chat forums about children with Autism. Needless to say, I had forgotten about it for a few days until just a few minutes ago. I thought to myself I really need to update mine and just maybe I will come across some more readers for this very blog. Now don't get me wrong, I write this for myself as well and even if no one else read it. I would still write it.

As I was going through updating all of my profile and joining new groups of Parents with child who have Autism or any other number of pervasive disorders. I came across a journal entry that I had posted. The question was: Have you every been selected for jury duty?
My answer was this: Yes. I have been selected three times. In fact, I have to be at jury duty tomorrow on September 11. This journal was posted September 10.2001.

I stopped for a moment. In silent prayer. Trying to remember when the last time it was I had thought about that day and why I remember I was washing dishes with the TV on when the news broke. But why was it I couldn't remember I was supposed to have jury duty that day.

Although, It has been many years since that day and many don't think about it. I believe that tonight the good Lord was trying to remind me to be thankful and pray for our fellow man even if we don't know them.

And that something as small and insignificant as a journal post to a silly question can serve as a reminder of things we shouldn't forget.

Pieces

There is a tremendous sense of loss.
When the pieces don't fit the frame.
The sudden harsh realization
Your lives are never the same.
What about little league?
and cub scouts in the fall.
Will he ever get married?
or fall in love at all.
Every parent grieves
Every parent cries.
But eventually with time.
The wave of emotion subsides.
Tears replaced with patience.
and Sadness with a smile.
You celebrate uniqueness
Find joy in the smallest bit
Even when they tell you
The pieces will never fit.
There will never be another
neither near nor far
None will shine so brightly
As your own little star.
You'll rearrange everything
Your schedule, your thoughts, your life.
Somewhere amidst the chaos
You finally realize.
It will never matter to you.
if the puzzle is not the same.
You'll piece it together anyways
Regardless of the frame.

Written by: Monica Swain May 2010

Realizing my thoughts are completely random!

So yesterday I got the bright idea that I wanted to pay more attention to my blog. I even got the crazy notion that maybe one day I would turn my blog into a book. Obviously forgetting that I have no experience in writing save what I learned in high school and college which is far from what is needed to be a professional writer. Also finding out that I haven't the foggiest idea on how one would go about getting publish should the chicken scratch I produce be interesting to anyone. So I did what any half way educated person would do...I googled it!

Yep. You guessed it I googled "How to write a book."

Note to self: Google is not omniscient and buy a dictionary.

My Aspie Chronicles.....

I realize that I am going to have to rewind a little bit because I haven't blogged in a few months. So here is the 411 on the current goings on.

Autism Conference-The autism conference was absolutely amazing. I was a nice feeling to walk into a room and see so many people. There were many educators and parents from around our area. It is a great feeling knowing that you aren't alone. Not only was it great to talk to people who know exactly what you are going through, but I feel as a parent I should stay up and current on the current research as well as other issues that as a parent of an Autistic child might need to know. After the conference, I had a lot of questions. I took lots of notes and made sure that I jotted down any questions I wanted to remember to ask Mason's doctors. During the conference, there were a couple things that caught my attention. One was sensory integration therapy and the other was psycomotor epilepsy. After the conference, Mason had an appointment with a behavioral pediatrician in Lubbock.

Lubbock-The pediatrician in Lubbock was absolutely wonderful. She was very informative and listened when I mentioned that I was concerned about psycomotor epilepsy and was interested in having Mason evaluated for Sensory Integration Therapy. Mason's regular pediatrician in Abilene has told me that Sensory Integration Therapy was trendy and there was no scientific proof that it worked. I asked the Dr. in Lubbock about it she said that he was right however; that Sensory Integration Therapy is not a fix, which I already knew. But that it can be used to helped the child attain certain goals. To date he is not getting it yet but we will see what the future holds. The Dr. in Lubbock gave Mason an EKG. For those who don't know what that is, it is where they check the functioning of the heart. I was told that now it is something pretty much standard for children who are on long term medications just as a precaution. She also wanted Mason to have an EEG. That is where they check the electrical activity inside the brain. All in all it was a good visit and he will be going back to Lubbock every six months for a check-up with the Dr.

The most recent thing that is going on is Mason has had his EEG. I was devestated to find out that the results were abnormal. What they told me was that they saw slowing of brain activity. I am unsure of that that means. They told me that could mean siezures or it could be any number of other brain disorders. I thought for sure that the test was routine and that everything would be okay. I was told that I shouldn't be suprised that I knew Mason wasn't normal and I should expect things like this but the truth is. It doesn't matter that I know Mason has problems, everytime you hear that something else is wrong it is still devastating and you still need to grieve. Mason has been referred to a neurologist. The appointment still hasn't been scheduled yet so I am still waiting for answers.

If I could leave any advice for parents like me it would be don't give up. If you truly think that something is going on push the issue to have it looked at. You know your children best. Be their advocate.