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.


Showing posts with label virtual friendship. Show all posts
Showing posts with label virtual friendship. Show all posts

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.

Friday, September 2, 2011

Virtual Friendship in Reality

When a friend recently posted on FB that her sons' 1st day of school would be delayed by a week, and asked for ideas of what to do with them so she didn't lose her mind, I immediately responded  that we would be at our pool club and they should hang out with us for the day.

The thing that makes this very, VERY uncommon for me to do is that I had never met her before.  Or her boys.

She writes the wonderful, heartfelt blog, Try Defying Gravity, and our boys are around the same ages.  I love her writing and admire her.  Our stories are similar, and I've told her more than a few times that I feel like she's walked in my shoes.  We became Facebook friends and started sharing more personal stories, so in my mind, she was already my friend.

It wasn't until I realized that I wasn't sure how to pronounce her first name that I understood the enormity of what I had suggested, and how far out of my comfort zone that was.  She was driving an hour (and paying a small fortune) to come for the day.  What if I oversold the pool as a magical wonderland and her kids didn't like it? What if it was a total letdown for her?   And the most nagging question of all - What if I didn't live up to her expectations in real life?

I realized today that I need to learn to trust my instincts and not over-think things (those of you who know me are laughing outright that I just said "over-think" and "me" in the same sentence...) 

She and her boys were so incredibly nice, and we had a great day.  Her oldest went on the slide a hundred times, the obstacle course, the bumper boats and in the wave pool, while her two little ones floated around happily in the wave pool. 

And when my boys checked out completely after about a half hour, and I stressed about them sitting around moping while our guests were swimming without new friends to entertain them, she waved it off and laughed. 

Just like a friend would. 

And I realized then that I didn't need to make the day perfect, it just had to be real.

As Murphy's Law dictates, as soon as it is time to leave, your kids inevitably stop asking when it is time to go.  So even though it was Mario they bonded over instead of the wave pool I hoped for, we stood there for a few extra minutes watching them play together, like they had known each other all summer, and I was happy that I trusted my instincts about friendship.