Saturday, April 2, 2016

Why We #LIUB Every Year

It's April - Autism Awareness Month. And today is World Autism Awareness Day. Years ago, Autism Speaks started the Light It Up Blue campaign to further promote awareness of this neuro-processing disorder. Like pink is to breast cancer, blue is to autism. And we live with it every. single. day. No need for awareness in this house.

But not everyone likes to light it up blue...

Many in the autism community say, "Enough with awareness. We need action." True. Many don't support Autism Speaks because they think it is merely a money-making juggernaut that doesn't actually do much for autism families. Well, maybe. We need acceptance and inclusion, not awareness. Sure. But I think we need all of these things AND awareness more than ever. And that's why we light it up blue every year.

We light it up blue because I want my neighborhood and community to know that my son has autism. I want them to protect him. I want them to teach their kids about autism so that they will be kind. I want someone to call me instead of the police if they see Will wandering the streets and they think he shouldn't be (more on wandering in another post).

The police. We light it up blue because we want to remind the city of Frisco that it has a lot of residents with autism... more than 700 students alone in our ISD. I want the police to understand that our kids wander and they may not be compliant if stopped. I don't want any of our kids to get shot for not doing what they are told to do by a police officer. Yeah... I back the blue. I hope they back our blue.

We light it up blue to show solidarity with other families dealing with autism. And it makes me happy and warms my heart when I see others LIUB, especially those who have not been personally affected by autism (yet). To me it says, "We hear you." And I like that.

We light it up blue to show support for families who have faced persecution because of autism like the family in California who was sued by neighbors who said their son with autism was a "nuisance." 

We light it up blue because Autism Speaks has been instrumental in procuring legislative reform so that our families don't have to worry about whether or not their kids' autism treatment coverage will be mandated under state law. Did you know that mandated coverage varies from state to state (Texas was one of the first to mandate coverage). Did you know that not every state has an autism insurance mandate? What does this mean? Insurance companies have been able to decide that they will not cover autism treatment. But many states now have laws requiring them to. But for the work of Autism Speaks in this area, we'd be years behind on this issue. And we light it up blue because we still have a very, very long way to go. None of these laws are perfect.

We light it up blue because in years past, we have participated in the annual Walk Now for Autism Speaks and have seen thousands of thousands of people touched by autism and supporting our families coming together in solidarity.

We light it up blue for the people who think it's still cool to call someone, "retarded."

We light it up blue for the friend who got mad at me and didn't speak to me for a month because I suggested her daughter be evaluated for a speech delay.

We light it up blue for the people who have no idea that there child who isn't speaking by the age of 3 isn't just "slow" or a late talker. We do it for the people who have no idea what the autism red flags are. Those people are out there. They exist. A lot of folks won't know what autism looks like until it's blank staring them in the face.

We light it up blue for the moms and dads who will hear the words, "Your child has autism," and will have absolutely no idea what to do or where to turn to for help.

We light it up blue for the folks who thank us for being so open about our journey because it helped them with their own children.

We light it up blue because our son who is 1 in 42 boys on the autism spectrum.

I don't always agree with the stance Autism Speaks' take on some issues, but there is no denying that the work they have done has helped increase funding and awareness for this disorder that has so significantly altered lives. Yes we need inclusion, action, acceptance and all that good stuff... but we get none of that when our kids are having a meltdown at the mall and the side-eye bystanders don't recognize that it might be one of our families in crisis. We don't need anymore awareness in our house... but there are still so many people who do. 

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