This blog post is by Lou Melgarejo, the father of three and whose eldest daughter is affected by autism. Lou was the recipient of the Autism Speaks 2011 Speak Out Award. You can find out more about Lou and his family on his blog Lou's Land.
April is Autism Awareness Month and April 2nd is World Autism Awareness Day as declared by the UN General Assembly. It is also the day that Autism Speaks asks for residences, businesses and buildings to change their exterior light bulbs from white to blue in an effort to kick off Autism Awareness Month and raise awareness via a promotion called Light It Up Blue.
Before we are even there I have already read my fair share of posts and comments criticizing the event. I have seen attacks on everything from the event actually doing nothing to help autistic people, to wondering just who it was that chose blue to represent the autism community in the first place.
If you are relatively new to the autism community… get used to it. It seems
that no organization or individual can do much of anything without somebody thinking they are going about it all wrong. Stay positive though. Just go with what you feel like is the best way to honor your autistic loved one or if you are autistic, whatever makes you feel proud. For my family, we enjoy participating in Light It Up Blue.
Last year was the first year that we participated. We heard that Autism Speaks and Home Depot
had a partnership going and that Home Depot would sell the bulbs with a percentage of the proceeds going towards Autism Speaks. So we bought out the display and put together autism awareness goodie bags for our neighbors that included a blue light bulb and information on autism, the diagnosis rate and some of the challenges our daughter faces. Our emphasis however was on how our daughter may be slightly different, she was loved and should not be viewed in a negatively because she was autistic. Putting together the bags allowed Sofie and I some time to talk. She proved yet again to be wise beyond her years. At 5 years old she knew that people being different was OK and not scary. She knew that her sister loved her and she loved her sister, and that as a family we could conquer anything.
We wore our Walk Now team t-shirts and loaded up the wagon then off we
went handing out the bags and talking to neighbors. Some of our neighbors knew of Bianca’s diagnosis others did not. We talked about it openly and honestly and we voiced our pride in our daughter for how far she had come and how BRILLIANT she is. The neighbors that weren't home, we left the bag in their door. I saw several of them later in the week and they were so warm and receptive not just to Bianca but to our family as a whole.
When April 2nd came around, I was incredibly humbled as family and friends across the globe tagged me in pictures of them wearing blue and having blue lights on and declaring that it was for Bianca. When I drove home late from work that night and turned the corner to head towards our house I stopped the car in the middle of the road. Of all the houses in both cul-de-sacs, only one did not change their bulb out. To their credit though, it was not on, so I am not sure if it was defective or they just didn't care to participate. Either way, as I sat there in my car in the middle of the street at 1:00 AM, my heart became full. There must have been a cat around because my eyes started to get runny. I felt like my neighbors had our backs. I felt supported. I felt like my daughter had gained friends and her condition understanding.
An even bigger surprise was that the cul-de-sac behind our house was ALSO lit up blue as was the one across the street from that. After a little investigating, we discovered that there was an autistic young man that lived a block away and his family had ALSO decided to hand out blue bulbs to the neighbors.
So when I get asked how Light It Up Blue raises awareness, or how a blue light bulb is supposed to help, I usually tell people about my experience last year. It opened up a conversation with my neighbors, it delivered compassion and not pity, it educated people, it got people to donate to a charity, it got neighbors talking and got our family talking. The more people that are aware of the situation at hand, the easier it will become to fight against discrimination, hate and bullying. The more people that know about the uphill battle families face for basic services and assistance, the greater our chances of getting help to little ones when that help is most vital. The more people are aware that autistic people are not only worthy of but DESERVING of our love, that they are not to be feared or shunned, that they are pure potential… the better for my daughter.
Have a little perspective folks. This is about raising a little awareness. Observe the day, don’t observe the day. Light It Up Blue, light it up some other color, don’t light it up at all. Do whatever works for you and try not to tear other people down. I just hope that you do SOMETHING to shine a light on autism that day.