Wednesday, April 2, 2014

Show your support

If you haven't heard its World Autism Awareness Day and April is Autism Awareness month. In honor of this day we do what we call Light it up Blue. You wear your blue, decorate blue, you find some way to show and share the support. For most families like us its a great day to get the word out about this ever growing disorder that now affects *About 1 in 68 children has been identified with autism spectrum disorder (ASD) according to estimates from CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network and *ASD is almost 5 times more common among boys (1 in 42) than among girls (1 in 189) This is according to the CDC Data and statistics from their latest research. That is a pretty scary number if you think about it. Chances are you know someone, probably a family with a son, who has a child on the spectrum and either they don't know it yet or you didn't realize it.  
I have been asked and apart of many conversations and debates about the every popular Autism Speaks organization that leads the nation in Autism Research and is the name behind the every popular walks you hear of around this time of year. While there are many things I raise an eyebrow to with this organization and realize that not always does Autism Speaks, speak for my family, I do know what they provide to families resources that are very beneficial and I have utilized lots of what they have.  However supporting small local organizations and families is not something they do.  So why do we walk for with them and raise money for them?
If you ask most families who are given the news that they themselves or a family member is diagnosed with a disability, disease or disorder the first thing they do is look to the world wide web to find support and resources.  Most who are diagnosed with Breast Cancer look to the ever popular Susan B. Koman Foundation, however now they have been in the news for their own set of controversial issues, If you are familiar with Lance Armstrong and his organization for cancer, Livstrong, you are aware of the controversy behind that.  I have looked to Autism Speaks since day one for all our Autism needs not even aware there are other organizations, not really locally, that can also provide some great information and resources however they don't do the big walk that AS does. Not that I am in this for the walk, but just like the Race for the cure, Light the night, The 3 day I walk because its a feeling of belonging. I belong with these families.   Remember Cheers? " You wanna be where everyone knows your name? Well this walk to us is where everyone understands and shares support. 
I debated heavily this year on doing it or not. I am slightly competitive and while I know this is not a competition at all I was more in it to raise more money than last year and have more walkers with us too. However the more I think about it all my heart just isn't as into it. Chalk it up to a preoccupied mind maybe, but part of me believes its due in part to my new found thoughts and feelings on the organization. I love raising money for a good cause, however I would love to raise that money and keep it local. We have so many ASD families, ours included that could truly benefit from the funds to help cover the cost of therapies, doctors, aides, respite care and equipment.  Autism Speaks however doesn't do that for us. It's not their fault its not part of their organization. 
This year while we light it up blue to show our support, and we will continue to do so just like those wear their pink during breast cancer awareness,  next year we will just not fundraise for the big walk here in Abilene. I will walk because I want to be amongst those who get it and understand. I am not sure it makes sense but I just have felt so conflicted by it all.  I do have plans though. BIG plans or so I hope. I just need to get some thoughts on paper and some time to get it accomplished. 
I want to do a walk to raise money to help our families locally. I want to continue to raise awareness and help other families but to give them local resources and help them feel that they don't have to wait till April to connect with them.  I want to bring families together and utilize community resources, create more resources to help families year round. It is going to be a huge undertaking and one I want to take on so that families don't feel so hopeless here.  That there is something here in this community to help them year round.  I found my mission and my calling. I found a community that I can possibly reach out to and help an its an amazing feeling. So in a few months when I am pulling my hair out and stressed trying to pull this off can you guys remind me of this?! HA HA just kidding. I think........