Understanding

I have never liked labels. I like it even less when one casually self-diagnoses oneself with a label. Having said that, I think it is helpful to know yourself well enough to know when a label fits. Especially when that label gives you a better understanding of yourself.

Shortly after the loss of our first son, we both came across labels that helped us make sense of our reactions. I was expecting certain behavior from Akahige, and he was befuddled by his own emotions and mine. We have not been officially diagnosed because these conditions are difficult and expensive to diagnose in adults. However, research has opened a new world to us and strengthened our relationship with each other. I feel it is time to share more about ourselves with our family and friends in hopes that it will help you gain comfort in the way we express ourselves.

I have the blessing of dealing with Sensory Processing Disorder,  http://www.spdfoundation.net/about-sensory-processing-disorder.html
. Akahige has the classic symptoms and childhood experiences associated with Asperger's Syndrome (aka High-Functioning Autism) http://en.wikipedia.org/wiki/Asperger_syndrome

People seem to have heard more of AS then SPD. We have both found ways of dealing with the idiosyncrasies that come with these conditions, but we will always have unique attributes that set us apart. I will be addressing the attributes that are most obvious (during our time of mourning) in more detail. 

Akahige experiences emotions, but he has a hard time identifying and being able to express the emotion. When dealing with situations of high emotion and social expectation, he finds it easier to withdraw (mentally or physically). This manifests as a need to participate in his unwind activities such as video games, reading, motorcycle riding, etc (usually solo activity).

I will explain how I experience life with Sensory Processing Disorder  My biggest sensory trigger is sound, followed by touch, temperature, and then light. I have more difficulty dealing with these when under a high level of stress. I have to put myself in a timeout or withdraw until the anxiety levels normalize.

Sound:
I can't watch movies very often at a theater and sometimes not even at home. The soundtracks cause me to shake like I am sitting in a freezer. This has also happened while watching TV shows. So I don't partake. Akahige has become used to watching things by himself, and if it is one that I am interested in he tells me the story line. I am unable to understand speech if there is a lot of noise such as background music, TV, children, many voices talking, etc. When I am not under stress, I can usually compensate with concentration and focus on the conversation, but it can be very difficult at times. (Yes, I know this is one of the areas SPD and massage therapy seem to conflict, but I am familiar with my music play lists and change the volumes to be able to tune into my clients voices. Even then, I am not afraid to ask them to repeat themselves if I miss something spoken.) If there is too much noise, I mentally leave the area and if that isn't possible I usually have an anxiety attack. I cope best when I can physically dismiss myself to a quiet area and regroup. If I am not in my own environment, having my own, familiar music to listen to can help calm me.

Touch:
I am not a huggy person. I can handle two brief hugs from the same person a day usually. I do understand social norms, and I can usually accommodate if I prepare myself. I hate light and lingering touch! These quickly trigger my anxiety. Why am I a massage therapist? I do not like touch that I don't initiate or know the pattern. I firmly believe touch is healing and therapeutic. I never get Swedish massages because the light, unpredictable touch bothers me too much. I also don't like giving them either because it is too much light touch on my end. My massages have order and patterned touch. This is the one area I am struggling with the most right now. Everyone is sorry; they need comfort themselves or are trying to comfort me the best they know how. I am trying to respect those feelings, but my anxiety levels are increasing to the point I am avoiding social situations. So, please, if you come around to visit, don't hug me or expect me to hug you. I really can't right now. The only 2 people I can stand hugging are my boys. So ask them to give me extra hugs if you really need to hug me. Akahige doesn't mind hugs he just doesn't know when to give them. Thanks!

Temperature:

This is not recently a major issue. Being home where I can control the temperature helps. I overheat quickly and can chill easily. 

Lights:

This is not a major issue recently, but it can become the straw that breaks the camel's back. I have to be careful with bright lights or many hours in the sun. My headaches and migraines (SPD symptoms) are reduced when I am careful in this area.

In short, it sounds like I have control issues. For years, that is what I thought about myself, but I know now that controlling my environment helps reduce the anxiety attacks. I am more able to cope when I am not mentally or emotionally stressed. Unfortunately, I am very emotionally raw and having a harder time keeping myself calm. I hope this post helps you know us a little better.

I am enjoying spending extra time with my boys and it is great therapy. Returning to work will also help me return some order to my life. I cope best when I am living peacefully.

We have strong belief in eternal families. We know if we do our best, we will get the chance to be with our son and daughter again. Does this heal our broken hearts? No. But it gives us hope and peace.