What Autism Shines Means to Me

I couldn't watch the news. I didn't read the papers. I only read the Facebook posts of close friends, and even limited my exposure to those.

Like everyone else, I was numb after the horrific shootings at Sandy Hook Elementary School in Newtown, CT. I went through the motions in the days after, trying to process the horrifying act, grieving for the families who lost their beautiful, innocent children, and trying to figure out how I was going to handle telling my own children.

There was too much pain. Too much sorrow. And then there were accusations and name calling and hate. Hate filled Facebook pages were created, like "Cure Asperger's, Save Children from PsychoKillers". Cruel comments were left in posts that had been written to promote tolerance and to educate. Strangers private messaged my friends about their autistic children. Threatening, scary messages.

I felt paralyzed. I wanted to take a stand, but I knew I couldn't handle such a confrontation on my own. My sister encouraged me to write about it here, to try and get people to listen, and I told her I couldn't. I was barely keeping it together for my own family. Just watching my writer friends bravely advocate and seeing the hate spewing back made me feel sick to my stomach. I couldn't take on the hate myself and instead hid behind these friends, looking for a way to gain the strength to stand up with them.

As if they understood what the rest of our community needed, these friends created a way to return a sense of security to us. When I learned about their idea on Friday evening, I felt like a weight had been lifted off my shoulders.

And after a week of avoiding both my computer and social media, I immediately sat down made this:

 

I thought I might be the only person for whom Autism Shines was a light in a dark tunnel, but I could not have been more wrong. Less than two days later, there are over 2,000 likes. Photos and stories are being submitted constantly. Faster that the administators can post them. They are being shared all over facebook among strangers. Caring, tolerant strangers.

 

I keep going back to the page and am overwhelmed each time I do. But instead of being overcome by the grief and fear and hopelessness I've had all week, I'm filled with hope and gratitude.

 

And I finally feel like I can talk about what's happened, and take a stand to help advocate for my son and for others with autism. 

 

Thank you to the incredible people who came together to create this space for us to start to heal. You have done more for me than I can ever express. xo 

 

If you haven't yet had the chance, or if you could use a lift, please take a moment to visit Autism Shines page on Facebook. It will make your day much brighter, I promise.





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.

xoxo
Kristin



Just a Walk in the Park

When I had to stay home from a planned hike earlier this week to take care of sick Johnny, my friend suggested James go along with them anyway.

He didn't want to go. He was nervous. He thought he'd get lost in the woods or get separated from everyone. He didn't want to leave his dad and me. He was convinced that something awful was going to happen to him.

Tony and I finally talked him into going, assuring him that his friends and their parents would take very good care of him. He agreed to go with a noticeably shaky voice, but was still second guessing his decision on the way to his friend's house.

I talked to my friend about it. We've been in this place together many times (I wrote about it here), and she completely understands his fears and my worries. She assured me that both she and her son would stay close to James and make sure he never felt scared.

And then she sent me this photo. This absolutely perfect photo that made me realize for the bazillionth time that both James and I have the most incredible friends. Ever.

I can't stop looking at it.

 

And every time that James tells me he can't go somewhere without me, or he is afraid that he will be left alone, I'm going to show him this photo.