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.

Monday, April 2, 2012

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.


Alysia said...

Love this <3

Anonymous said...

Great post, people fear what they don't understand and then form an opinion based on ignorance, it is up to us as parents of children with disabilities to help the world understand our children, they can't do it themselves so it is yet another responsibility we have been given. Our children are like any other children who want to be accepted and loved and given the same love and patience as their peers, the fact that they have more challenges should entitle them to even more patience and understanding and hopefully by sharing our experiences we can help the world give them those things and love them as much as we do! Carolyn

Lisa said...

Oh, this encapsulates so much of what I want to say on a daily basis. If there was more understanding and less judgment out there...oh what a wonderful world it would be..

Lisa C. said...

Hi Kristen,

Promoting awareness of and an understanding of children with disabilities is our own mission that we work at each day. When I look at what our kids are capable of and how each micro-step they take towards happiness, confidence or progress, whatever it is....fuels our passion to continue on this journey -- somedays tired, somedays with gusto but always with perserverance and a dedication to giving our kids every opportunity to help them thrive.

With gratitude,
Lisa C.

Anonymous said...

I love this Kristen! The presence of understanding and empathy have had a profound impact on some of my challenging parental experiences. Education, awareness and acceptance would not only change the lives of our incredible children, but also those who have yet to meet them.

krismac said...

That was perfectly said and incredibly thoughtful. Thank you Carolyn!

krismac said...

So right. It would be wonderful for everyone, I wish the people who are doing the judging realized how much happier they would be with a different outlook! Thanks for reading and for your thoughts Lisa. I appreciate it!

krismac said...

I totally agree! Thanks so much for taking the time to read this and share your thoughts.

krismac said...

Exactly Lisa. Thank you!!

krismac said...

Thank you Alysia. I know you are always able to relate and have similar experiences. While I wish it was easier for all of us, it helps alot to have people who understand so we know we aren't alone.