Monday, April 28, 2014

What would you do if?

What would you do if you were told you needed to get your stuff and get out ASAP, that a fire was near by and not containable? A storm was coming and could damage your home in a matter of seconds? Rain has been coming down for hours and suddenly your home is now a lake? What would you do? The last 36 hours have suddenly started making these things a reality for our family. Its hard to wrap your head around for just a typical family but when you have children with various medical needs and or disabilities its even harder to prepare yourself for.
Eight hours ago our very close friends were told they needed to leave their home for fears of a partially uncontained wild fire was headed their way. Chris and I stopped our evening to head out that way to help them. As we got ourselves ready to head out I looked at my teenager and started thinking about what would we do. As we drove home that evening from base we saw the smoke billowing through the hills in a field across from where we live. As far fetched as it might seem the way this fire is going it could be a harsh reality for us also.
I sat on my friends bed watching her figure out what she needed, her wedding dress (she is getting married in a few weeks), photos, clothing, all important documents for her and her children, and anything else she could think of in her moment of a controlled panic. Its all Chris and I could do to just ease the discomfort by adding light humor and our own sound advice as he is a fireman, I thought about more and more my two boys at home.
Before we left I found our notebook and packet with all sorts of information about H. I reminded Sean of the signs on our doors to alert first responders of H and his Autism. I put all his paper work, his back pack with a change of clothing, medication and his therapeutic supplies, the dogs leash and a set of house keys. I told Sean that there would be minimal to no cell service due to the towers being burnt down so to call Seth if anything happened. He was instructed to not leave the house without the three of them in tow and to only do so if instructed and to contact the emergency contacts if we were not reachable.
I began to think about the amount of pressure I just placed on my teenage son. They accountability he now has for our family. How my lack of preparation has now just sort of piled more responsibility onto him. However without batting an eye he was confident and assured me that this was all good. Thankfully that bag was not needed nor none of the other things but he was prepared if need be.
We sat for about 3 hours tonight at our friends house. Smelling the fire, seeing the smoke and watching the neighbors load up their cars. I watched children bring out bags and toys, I saw families with worry and concern on their faces, I saw friends and family come together and do what they needed to help their loved ones get to safety. It makes your heart hurt to see that. You never want to see someone lose everything they worked so hard to gain.
We know many of those out their on the front line trying to contain this beast. We pray for their safety and have faith they can put this out. We pray that this weather starts to cooperate and that we can get some relief to these folks. I pray my friend doesn't lose what her and her fiance have worked so hard to get. I pray that they are not told tonight to leave their home and pray for the best. I pray none of us have to ever face a situation like this.
This is our bag. This is just a small portion of what we would need if we would have to leave on a moments notice but this is just all what we would need for H if we had to go and had no chance to get anything at all. Tomorrow I am going to take some time and make sure we are fully prepared for anything that might come our way.   

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........