He runs to make his mind still, to organize himself and to get rid of the noise from this loud, confusing world. The more he's moved, the more he's introduced patterns and rhythm into his routine. Laps around the house are a daily ritual. He's made it more complex as he's developed, but the basics are the same. There is a pattern of movement -- specific foot patterns based on whatever song or chant he chooses to accompany the run, and he can not be stopped until he is ready to be.

This is James, and this is our story.


Thursday, October 13, 2011

Posting at SPDBN

A few days ago, a post I had written was published on a website called SPD Blogger Network.  It was called The Kiss that blew me away and it was about something sensational that James did last week.

SPD stands for Sensory Processing Disorder, and it is something that affects James every moment of his life and often debilitates him.  He is overwhelmed by the world around him and is unable to filter everything out the way that you and I can, to only pay attention to what he needs. 

Everything.  All the sounds, the smells, the lights, the random movements of everyday living.  They all come at him full force, all at once.  He can't block any of it out. 

Imagine how distracted you would be every moment of the day.  Think of how difficult it would be to focus on anything with so much sensory input being hurled at you.  Consider how scary it must be to feel like you are being assaulted by things that don't seem to bother anyone around you.

Even his own body fights against his mind, so simple things we take for granted, like spitting out toothpaste, are incredibly difficult for him.

A child's favorite act of rolling down a hill is something that he has to break down, step by step, watching demonstrations over and over again, to try and get his body to be able to make the movements necessary to be able to do it.  It pretty much takes all the fun and spontaneity out of the act when you have to work so hard to be able to do it.

It is painful to watch your child go through this every moment of every day. It has consumed my mind for the past 8 years.  And although we have incredibly supportive family and friends,  there have only been a handful of people I could actually get advice from because SPD is so complex, and I have often felt alone.

Until recently. 

The SPD Blogger Network is a 24/7 virtual support group for parents to share stories, both successes and challenges, to find answers to questions, to vent, or simply to hang out in a "place" where other parents get it. 

I wish to hell I had this site when we first started on this journey, but I'm thankful to have it now.

SPDBN shared my glimpse of a single moment where one simple gesture made a huge difference to me.  I'm grateful that people who read that post understood the significance of that moment and gave me such amazing words of support, and I want to continue to contribute to this incredibly welcoming community in any way that I can. 

If you haven't had a chance to read about the kiss, it would mean a lot to me if you'd click the link and read my story on SPD Blogger Network.  And once you are there, please look around and read the stories from other contributors, parents like me, because each of the stories is important, and each is sensational.

No comments: