As many people know, April 2 is the World Autism Awareness Day. It was established in 2007 and it encourages Member States of the UN to raise awareness of the condition.
Though it is believed that the concept of Light It Up Blue was created by the Canadian Autism Society, there is one organization that promotes the event every year in the U.S.
This year, like every other year before (my son was Dx on 2008) I try hard to raise awareness by wearing blue, handing out information about the condition, sharing on social media and even getting my blue light bulb. The picture here shows the actual light bulb (party light) I bought from a hardware store. It’s not the one sold with the logo of the organization, is a simple party light that comes in a white package sold in any hardware store. The only difference was that this year, I received a message on my Tumblr account asking me not to participate because the organization that promotes the event was “bad”and not really compromised with helping the families of those with autism. It prompted me to search the internet using the term “bad”along with the name of the organization. I have to say that I did. I have to say that there are countless people who do not support the organization because of how they spend the money – research on how to cure autism instead of accepting it, overpaying board members, using little of the funds to help families and those with the condition- to name a few.
After reading (and replying to the message) I had to ask myself why I decided to LIUB on World Autism Awareness Day. Was it to promote an event? To support an organization? the answer was simple… I don’t support organizations, I support my son.
It has been a long journey for us. Before your son gets a diagnose, the road is hard. Getting a diagnose is like re fueling your tank to keep on going. I’ve been on this road long enough to say that it is my duty as a parent to raise awareness and educate those around me so my son and many other children don’t have to go through the pain of people staring, talking, and asking why is he/she is like that? So the parents (like me) don’t have to wrestle a school system plagued with incompetence, full of unqualified teachers that doesn’t want to help children (not all of them are like this but believe me, you will get more than a few).
In the years that I’ve been on this road (my son is 14 now) I had to learn how to be a psychologist, nurse, occupational therapist, advocate, but above all… a mother of a special kid. It is my job as a mother to give my son the tools he needs for a brighter future. A future I’m sure no organization will give him, but I will. That includes the decision of giving him a better education in a school that I can’t even afford.
Will I light it up blue next year? Yes I will. Not because of any organization but because we have to raise awareness so our children can have a better, more inclusive environment. Not for a cure, but for better opportunities in a future. Not because someone asks us to do it, but because we choose to participate in their idea for our cause, for our journey.