Following the Leader

He was two. Although it was still a bit light outside, it was way past his bedtime and he was exhausted. We all were.

We couldn't figure out why he was so out of sorts. He seemed fine until we started trying to put him to bed, but each time we tried to put him in his crib he started screaming. He was trying to wriggle out of our hold. The closer we tried to hold him to console him, the more upset he got and the more he fought to get away.

He kept going for the front door. He needed to go outside. I tried to think of what we had done that day that might have set him off. Nope, nothing different. We did an inventory check of all the things he carried around. Everything was where it should be. Nothing was missing. Nothing was left out in the yard.

He kept trying to get past his dad blocking the door. We couldn't redirect him. We couldn't calm him.

We had no idea what it was that he was looking for, but we knew he wasn't going to calm down until he got whatever it was.

Finally, we gave up and opened the door. He bolted outside and went straight for the front gate.

Tony followed him. I stayed with baby Johnny and waited.

James went across the street to our friends'. Tony explained that he had no idea why, but James needed to come over and he now wanted to go in their house. They all watched James run through their house and out the back sliding door to their backyard. He bee-lined for the Little Tykes slide and went straight down.

And his face changed. In the 2 seconds it took to slide to the bottom, he became calm. He allowed Tony to pick him up and he rested against his dad as he was carried home. He laid down in his crib, relaxed.

I realized that night that James was the only one who knew what he needed, so we should follow his lead.

Last year I asked all my friends to wear blue for Autism Awareness Day and think of James. I put a blue light on our front stoop and left it up for the entire month. I put a puzzle piece magnet on my car. I wrote a post about what I thought we could do to educate others about autism. I did all the things I thought I should do as James' mom to help raise awareness and understanding.

But I realize now that I was thinking more about what I needed last year than what James needed. I wasn't following James' lead.

James has never liked to receive any attention. At all. He has always hated when we said "good job" to him or praised him, no matter how great the accomplishment. I think it puts too much pressure on him, but I don't know for sure. He's never told me why.

Lately his little brother has been talking about autism. I'm happy that Johnny is trying to understand it better, but James gets really upset when Johnny brings it up and he tells us in no uncertain terms to stop talking about it.

I'm trying to help James navigate it all without telling him how to feel. I don't know how much he understands because he doesn't want to talk about it, but I can tell it is on his radar. Out of the blue the other day James asked if his friend has autism. When I said yes, he told me that was good because we could bring the friend to our autism open swim at the local YMCA. It is little glimpses like this that confirm we are on the right track. It all just needs to be in his own time, and it needs to come from him.

I should follow James' lead on all of this. I want to make sure that I don't try to speak for him, because he has his own voice. And it is getting stronger every day.

So for Autism Awareness month, I am not going to draw attention to James by having a magnet on my car or shining a blue light on our front stoop. I will continue to support my son and quietly watch to see which slide he chooses to go down next. And I will follow his lead.

Raising Autism Awareness and Empathy - Together

I woke up this morning filled with hope and promise. There will be more understanding. More empathy. Buildings will be lit up in blue. There will be bright blue shirts and scarves, and lots of puzzle piece pins. Everyone will talk about the importance of research and understanding. Today is World Autism Awareness Day. People are going to get it.

But too many of them still won't, and all the blue lights in the world are not going to change that. Our trip to the grocery store this morning made that crystal clear:

He isn't being a brat because they don't have his cookies in stock. Now he doesn't know what he is going to have in his lunch tomorrow, and that scares him. My promise to go to another store and get them doesn't help, because he won't be there to see them go in the cart. He is desperately trying to hold it together, but this unexpected setback, as well as the realization that now he is going to be behind schedule getting to school and late starting his morning math because he has to try to pick something else out, something different than he has every day, is all completely overwhelming to him.

I know his crying is unnerving. I hear it in my sleep. I realize it is unexpected to see a 9 year old hyperventilating over a missing box of M&M cookies. Although I'm usually hypervigilant and try to diffuse potential meltdowns before they occur, this one took me by surprise too. I get that you just wanted to get your groceries and get out without drama. I did too. But now I have to try to console and reassure him while at the same time I feel like I need to explain this to you, and that is completely overwhelming to me. He senses that unease and it makes him even more anxious, and he cries harder.

I know you understand. If you are reading this blog, you know James. You have a James, or a Jane, in your life. You understand them. You go out of your way to help us parents every day, not just on April 2nd. You ask if you can watch the kids for an hour or two so we can get a break. You forward articles and stories you know are helpful. You applaud progress and show concern in times of challenge. You offer a shoulder and an ear when we need it. You are there for us, and we appreciate everything you do.

But what about the person in the grocery store giving us that look?

My friend wears an autism pin when she takes her boys to the store. She shouldn't have to make autism a fashion accessory on her shirt to avoid getting that look. We need to help her by changing that look from one of contempt to one of understanding.

We have to do it together. Reach one person at a time. Tell your own story about James, or Jane, and you can reach people who don't know them like you do. Show them a picture. Make them understand that these are people you love. Incredible people. Tell them the things James and Jane love to do and what makes them happy. If they know James before they run into him crying at a grocery store, maybe they will understand instead of getting annoyed. Maybe they will offer an understanding smile, or whisper a word of encouragement, and then continue on so I can focus on supporting my son.

It is going to take a lot of effort, but we can do this together. We need to weave understanding and empathy into our every day conversations so that individuals with autism spectrum disorder are fully part of our community and have the support networks they need and deserve. But it needs to come from all of us together, and it needs to be constant. Not just on the day with the blue lights. And not just from me during a meltdown, stressed out and trying to explain it while my crying son drowns out my voice.