Thursday, September 27, 2012

Sensory Disorders, Autism Evaluation and "I am right. You are wrong."

Yesterday was an interesting day. I want to talk about it but before I do, here is some back story. For those of you who have been following my blog you noticed that I only posted once in July and then not at all in August. There were some things going on with Nolan that I needed to get a grasp on before I would talk about it.

In June I took Nolan to his pediatrician to talk about the fact that he was not talking, at all, not even mama or no! At this point he was almost 21 months, 18 adjusted (due to his premature birth). By all standards he was behind in speech. At that point I had also noticed that sitting still and reading a book was almost impossible and he had started to spin when he would get stressed out. He did not always respond to his name and would not look at people he did not know in the eyes. The doctor referred us to Early Intervention and after SIX different evaluations by eight different people I was advised that he was significantly delayed in speech with moderate cognitive delays. Now I know that many of the people evaluating him did not see the him the way I see him because he was stressed out with them in his home, but to say that I was heart broken would be an understatement. I know his intelligence. I see it daily.

Fast forward a couple of months and Nolan is now getting weekly therapy appointments with a speech and occupational therapist and it has been discussed that he has some sensory processing disorders, mixed to be exact. He seeks visual and tactile sensory input AND he can get overwhelmed and over sensitized by the input he seeks.  So it is a constant balancing act to keep him stimulated and protect him from getting over stimulated. That is what the occupational therapist helps me to understand. She helps me to find him appropriate and satisfying sensory play. Here is the web site on it if you would like more info on sensory processing disorders The speech therapist helps him create/build his communication skills. I also started with the alternative therapy NAET, which I will talk more about later but here is the website if you want more info

And finally Nolan is scheduled next Friday with his first appointment with a developmental pediatrician for Autism evaluation. Which I will talk more about, again, at another time.

So I was cruising the internet at 2am yesterday morning because I could not sleep. Nolan was awake and I had a bitch of a migraine. I was looking up info on Autism and twins, ID or fraternal.  I thought I found a study that said identical twins are diagnosed with Autism more often then fraternal twins or singletons. And I asked if anyone else on one of the TTTS facebook pages I am on had ever heard of this. It started a long discussion about Autism, which happens almost anytime it is mentioned since there are many different people who believe there are many different causes, including that it is not a real diagnosis. Anyway, I got into a disagreement with another TTTS mom and in the end I could not find the link of the study I thought I had seen. I got snappy with her and ended up feeling let down with myself. She expressed that she needed to believe that Autism was genetic because that made it less scary to other TTTS parents. I learned that I needed to believe that Autism was due, at least partially, to environmental causes because then I felt like I had some control over it. I well know that it is our attachment to being right, or thinking we have control can lead us to great pain in our lives. And I know that I am very attached to this, right now at least.

What hit me after much of the discussion had ended was that I was feeling out of control. That there was one more thing to deal with that I did not choose to happen, especially not to one of my sons. I was fighting to believe that there was something I could do to change or alter the possibility of an Autism diagnosis for my beautiful Super Hero Nolan and that caused me to fight with someone else over something as silly as what causes Autism. Don't get me wrong, the effects and challenges of the symptoms of Autism are not silly but to fight with someone about why it occurs or even what it is, THAT is silly. But we were both attached to what we needed to believe to keep us feeling safe and empowered. I got sucked into the game.

Just when I think I have healed from many of the recent things in my life, something else happens and it takes me back to the beginning of my pregnancy. There has been little breathing room, little pause, little quiet and very little adjustment time between. And then when I get attached to an outcome, when I need to be right, like with the Autism discussion, I get angry, frustrated, scared, unhappy and rude. I am continually being given the opportunity to detach in the most intimate and important parts of my life, my and my son's health and well being. I am working on it Universe. I am working on it. I understand that am being pushed to remember that my power DOES NOT come from fighting with someone about their beliefs or perceptions but it comes from my willingness to take what I am given and create something new. That is my true spiritual strength. And - dear Universe, if you would be willing to give me some moments of calm in between, it would be beautiful.

I will end this post with a moment of calm I found between Tobey, the family cat, and Nolan.
I feel very lucky to have caught this image.

PS - This is a rewrite of the "Random Events Overload" post. I deleted that post after realizing that it wasn't really saying what I really wanted to say. :)

1 comment:

  1. One thing I have learned quite recently, that I find Surprising, is the Tremendous Disempowerment brought about by an Autism diagnosis. I have been attempting to gather some Useful information for a mom at the local school here, who has a daughter in Astrid's class. She also has a 12-year-old with "Asperger's/Tourette's". The Short Answer: "There is NOTHING you can Really Do!" Terrible. & the Implications of this are Under-Appreciated by many, if not Most, people.