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.

Tuesday, November 20, 2012

Creating a Special Space

I watched the three year old drop to the ground and giggle as he rolled down the tiny mound. I laughed at how unbelievably adorable it was that he viewed the mound as a rolling hill. I remembered countless times of hill rolling with friends without a care in the world, and felt that inner peace you do when you watch children at play.

Then I turned to James and waited for him to follow his friend. He made some really awkward movements. He lifted his arms up and down and looked, confused, as his friend laying a few feet in front of him. He painstakingly tried to lower himself into a position where he could roll.

And all of a sudden the reality of our situation slapped me in the face.

Oh my god. He doesn't know how to roll down a hill. He is four years old and he can't figure out how to lay down on the ground.

Sensory Processing Disorder wasn't new to us. He'd been faithfully seeing his Occupational Therapist for over a year, 2x a week. We had booklets of evaluations with phrases that I was still trying to comprehend. Dyspraxia. Gravitational Insecurity. Tactile Defensiveness. Low muscle tone.

The list went on. Since I was still trying to remember what PDD-NOS stood for and was completely overwhelmed by the diagnosis on the autism spectrum, I tended to downplay the sensory side of things - even though I knew in my heart that Sensory Processing Disorder drove so much of his behavior and anxiety.

That moment completely woke me up, and I started focusing on the sensory issues. I paid close attention each time we went to a playground. I watched him run laps around the perimeter instead of climbing and consoled his meltdown each time I'd try and put him in a swing.

It was frustrating and heartbreaking. A good friend's birthday party at an indoor playground should have been heaven for a five year old. Instead he sat still in a little car and watched nervously at the twenty- two other children running around him.

James in the middle of his friend's birthday party.
You would never know there are 22 kids running around him.

The aquarium and the zoo. Trampolines and slip and slides. A sit and spin. Slides and tunnels. All were added to the growing list of things to fear and avoid.

As his little brother grew, it was clear he was a thrill seeker. I had to find ways to let Johnny go on the merry go round while James screamed because he was terrified to even be near it. I avoided any place where James would be out of his element because it would mean that Johnny wouldn't be able to play the way he wanted to. The way he should have been able to. I felt trapped knowing that we couldn't go to the same places my friends were taking their kids.
Thankfully we had the best OT in the entire world. Amy was able to immediately see and understand James' reaction to everything in his world, and she created incredibly complex programs that helped address these challenges head on. We started sensory diets at home that began to help.

Sensory seeking kids need and deserve a place where they won't be judged when they crash and spin and jump and seek activities that organize them. They need to go up the slide and down the stairs without receiving disapproving looks. Other kids like James need a safe space to overcome their fears and not feel inferior to others.

And parents of ALL these children need and deserve a space that provides all of that for their families, and arguably more important, the community that will inherently come with it.

My incredible friend has taken a leap to open such a place. It is called SenseAbility Gym and it is a much needed place for kids like James. For families like mine.  They are in the running for a $25,000 grant from FedEx to help them get off the ground. You can vote for SenseAbility Gym every day until 11/24.

Vote HERE. Every day until 11/24. Vote for James and for hundeds of other children this gym is going to help. Vote for me and for all the families who will actually be able to enjoy a public play space, possibly for the first time ever.

And thank you. From the bottom of my heart. I know how lucky I am to have such an incredible support network. I'm so thankful to have friends and family like you who take the time to read our story, and I appreciate your support more than you will ever know.



Alysia said...

I love you.
Best roommate, best friend.
And now I need to wipe away the dust from my eye...

krismac said...

Love you more. And I'm so proud of you for what you and Tina are accomplishing with SenseAbility Gym. I've never been so proud to be your friend. xo

Anonymous said...

Love this post! Followed the link from Alysia's post tonight. My son is on the sensory seeking end. And you're right, no matter how kids are affected by SPD or ASD, it can be soooo hard to find activities where they can get what they need in a comfortable, welcoming setting. What Alysia and Tina are doing is a wonderful thing! --Monica