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.


Saturday, January 26, 2013

The Surprise Party

I looked up startled. 

I didn't just hear his name. That couldn't be him in that picture.

Not on the noon news. It was an alert for a missing child. It couldn't be. I played the clip again.

12 year old boy. Dorchester. Aspergers. The picture didn't really look like the boy I knew on first glance. But when I looked again, I saw him.

His name and an old photo. The police said he'd been missing since 8:30 am. I looked at the clock.

12:05 pm. I thought about how cold it was outside. So cold that I was talking myself out of even going for a quick run a few minutes ago. I was hoping the weather person on the news would say it was better to stay in and I'd have an excuse. I never thought I'd hear this instead.

I called his mom. No answer. I texted her: "I just saw on the news. I'm getting in my car now".

I texted a few mutual friends as I threw on my jacket. Jeanette would jump in her car to go look. I privately posted to some ASD parents who I had been talking with earlier that morning. I told them I was freaking out. It is all of our worst fear. A child with autism missing. They asked if the alert was on-line.

"I don't know. I just saw it on the news. I need to go help".

Within 30 seconds, Jim found the alert and posted the link for me to put on my wall. They all shared it immediately on their pages to their collective thousands of friends. Alysia tweeted it and got her own autism mama network out in Central MA ready to mobilize to Boston. Lexi called from RI wanting to drive up and help.

I grabbed my phone charger and a cereal bar and headed out myself. The car seat was freezing. The steering wheel hurt my hands to grip, so I unfolded my sweatshirt sleeves over my hands to steer.

How could he be outside all morning? It is only 20 degrees and the wind is so strong it stings and makes your eyes water. The news said all he had on to protect him was a fleece jacket and a baseball hat.

I drove around his neighborhood, thinking about all the recent shootings in broad daylight. I looked in the few stores nearby. I went to the zoo. I went to the Boys and Girls Club and left his description and my cell phone number. I called two of my best friends. A police officer and an EMT for the city. Both D'MAC. Autism mamas. They would know what to do. They would know where to look.

His mom texted me back with details. They had an argument on the way to the bus stop and he ran from her. She thought he'd go back to his grandmother's house, but there's been no sign of him.

"And it's T's birthday today. I can't tell him his brother is missing. He HAS to be home by the time T gets back from school".

I called her immediately. "We'll find him." I promised. "What time does T get home?"

I checked the clock. It was 1:30. I did the math in my head. I suddenly knew how to make something better, at least for now. At least for T.

"Bring T to my house after school. We're having a birthday party."

I called both my boys' schools saying something has come up and I would come get them early. I sped the 20 minutes to Johnny's school, grabbed him and went straight to the store. We ran up and down the aisles of Stop and Shop for 5 minutes, getting everything we would need for a kick-ass 9 year old boy party. Frozen pizzas, juice boxes. Cupcakes. Streamers. a ToysRUs gift card. Johnny picked out some streamer crackers and those little capsules you put in water that magically turn into sea creatures ("O-M-G" he yelled. "These are going to make the party totally awesome!")

I texted Jeanette again in the check out line. Balloons. We need them. Can you bring them?

I got a text from Alysia saying that Autism Speaks and Holly Robinson Peete were asking if there was a clearer photo to tweet. I felt incredibly grateful, but the realization that they were helping almost knocked the breath out of me. I instantly thought of all the urgent RTs I had seen from them both, all about missing children with autism. I knew the instant feeling of dread and helplessness seeing those faces and hearing those descriptions that were so familiar and, oh god, hitting so close to home even though I had never met them. But this time, it was my village. This was one of my boys. This couldn't be happening.

Johnny's excited monologue about the confetti crackers brought me back to where I needed to be, and I texted his mom to check for a photo while we walked quickly back to the car. 

On to James' school. We were cutting it close. It would take at least an hour to go across the city and back at this time of day.

Arrived at James' school. He and his friend Sean looked confused when they were brought into the office. I told them we were throwing a party for T. Cheers and screams of delight echoed through the office. The school secretary, the teacher who got the boys and I all exchanged concerned glances while they danced with joy.

Got home just in time to decorate the living room and make a sign for T, who was beyond thrilled when he arrived. Jeanette and I hugged his mom and sent her off before T saw her starting to tear up.

They spent the afternoon playing Wii and Minecraft. They "made" their sea creatures and took turns firing confetti at each other. They ran around shooting each other with foam dart guns and laughing.



When you are so rushed you don't pay attention to the party games your 7 yr old picks out,
you are bound to end up with something his sensory sensitive brother can't handle. Sorry James!

I fielded the continuous stream of texts, phone calls and FB tags asking for updates and offers to help.

4:30...5:30...6:30...

Time had never flown so fast, yet somehow everything was in slow motion.

T yelled that he was having the best birthday ever. Jeanette and I both forced a smile and avoided each other's eyes.

I stepped outside and called my officer friend back. What was the word? She gave me an update on how many officers and canine units were searching. I hugged myself for warmth and started shivering as she spoke. It was the coldest I'd felt all year and I was only outside for 2 minutes. My EMT friend texted me right after I got off the phone. She had questions, and she had ideas. What did I think?

I checked the weather when I got inside. 18 degrees. Real feel below 0. No gloves. No hat. A fleece. He had been missing for almost 12 hours now.

We had the pizza and cupcakes. Sean had to go home. There was homework to do. It was getting late.

Tony got home from work and we got a text from my officer friend. A boy fitting his description was spotted at a pizza place, but was gone when officers arrived. Tony looked at me and grabbed the keys. I felt hopeful. If Tony saw him, it would be OK. He trusted Tony.

1/2 hour later Tony came home alone. He checked every place in the plaza. Showed them a photo he took when they went to a basketball game last year that he kept on his phone. I couldn't believe I forgot about that. I called my first responder friends back. I have another photo. I'm sending it now. It might help.

T announced that his mom was the greatest because she was letting him stay out so late. 8 pm on a school night was incredible even for his birthday. I laughed as I looked away and silently pleaded. God please find him safe and bring him home. Now. Please.

T's mom called. Still no word. Tony brought T home and I tried to help the boys with their homework. It was a disaster. I gave Johnny all the answers, and wrote everything out for James. I just needed things to be easy. James got upset because he was supposed to read and it was already so late and he was going to be on yellow if he didn't do it. I promised him we would read in the morning, knowing that I would just mark it down. I had to do it. I needed them to go to sleep happy.

My EMT friend called just as I got James tucked in with his weighted blanket for the 3rd time. Her brother, a police officer, was working the case. They were trying to think of where he would go based on what her own son with autism might do if he was out there. I couldn't imagine having to consider my own child missing as part of my job to try and save people on a regular basis. I realized then she had 100 x the strength I already thought she had.

Tony got home after talking to T's mom. Still no word. I heated up leftovers and had at most 2 bites.

While I furiously exchanged texts with all our friends, we watched the 10:00 news. Banal meaningless snippets. Nothing. @Assignguy came on at about 10:25 with the same police alert photo and the same missing person announcement, and said he'd be back after the break with some other photos. I tweeted our recent photo to him. "I hope it helps" I said.  He tweeted back immediately "Thanks. Trying to get the word out".

I finally checked Facebook and Twitter and saw the incredible number of my friends and their friends who shared and commented and pleaded and prayed and offered to help search. I read Diary of a Mom's post with the link to the Boston Police Department and her message (to her almost 12,000 fans) saying "Please spread the word. This is OUR kid". Tears started flowing as I tried to write a response to all the people who were asking questions and sending prayers in the comments of her post. People I didn't know, but who were not strangers. They were all in my village. I needed to say something to them. I just didn't know what.

And just as I was about to hit send on a comment saying "thank you for your prayers", my phone rang. It was the EMT. As soon as I answered, someone else called. It was my officer friend.

"WE GOT HIM! HE IS SAFE!"

And with those words, everything was suddenly OK, and it was just T's birthday again. The way it should have been all day.



Note: I'm telling this story based solely on what it was like for me that day, because I can't even begin to comprehend what his family must have been going through. There were so many people who reached out to the family through me, or through Facebook and Twitter. People who had never met this family but offered to drive hours to come search in frigid weather, on city streets with a recent history of random shootings. It was a day during which both my real life village and my friends who live in my computer jumped to help out however best they could, and everyone I knew stopped in their tracks to figure out how to help a 12 year old boy get home.  I'm fully aware that I am the luckiest person in the world to have such incredible people in my life. His mom is not on Facebook or Twitter, so she may not realize exactly how many people came together to help her son, or the extent to which her son's photo was shared and prayed over, but please know that I will make sure she understands that she was not, and never will be, alone. She has a village of people standing by her side. A village that stretches all the way to Australia.



Friday, January 18, 2013

Saying Yes

"Mom? MOM? MOM! Where's the glue?"

I hesitated for a second. I didn't want to answer.

"Mama! Please? I want to make something!"

No. I didn't need an arts and crafts project right now. I was annoyed. I was tired. I just needed to escape for a few minutes. Not now.

"Mom? I found the glue!"

Shit. I needed a break. I didn't need to be cleaning up glue.

The weather was awful again, and we had been stuck in the house for days without a car. We were all bored. I was letting them play as much Wii as they wanted, going through the motions of cleaning and organizing. I wanted to be somewhere else. Anywhere else. I've never been able to handle staying in one place without feeling completely trapped, so after a few days of confinement I was starting to unravel.
 
I did NOT want glue.

I stared at the 3 huge baskets of laundry to be folded and sighed.

He called again. I stomped downstairs. They needed something every second. It was all too much.

I walked into the dining room to see glue all over the table, and Johnny trying in frustration to stick a piece of paper on another.
 
Aggravated, I said:  "See, this is what happens with the glue. It gets all over".
 
"But Mama, it's stuck. Can you help me?"
 
I sighed loudly and took the little red piece of paper out of his hands and stuck it firmly on the larger paper, barely looking at it.

"Now I'm going upstairs. If you can't do it without spilling then I'm going to make you stop".

I half stomped upstairs to pretend to do laundry again, only to sit on my bed and feel the tears of frustration start to swell. Why didn't I just say no and make him go play Wii again? Why did I always let them do things that I had to finish, fix or actually do myself?
 
And then right in the middle of my little pity party, Johnny came running upstairs. "Mama! Look what I made!" he sang, and he handed me his paper as he jumped around happily. I put on the biggest forced smile I could and got ready to look excited as I took the paper from him. 
 
But the second I looked at it, I didn't have to pretend anymore. And I remembered why I say yes.




I make sure I keep it where I can see it though, just for *those* days...