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Why I Walk


Our First Autism Walk

As we are approaching the 2012 Walk Now for Autism Speaks, I find myself thinking about how much this walk means to me and has meant over the last 7 years. Alex was diagnosed in February of 2005 at just 2 years old. I knew in my heart he had Autism. I knew that when he walked on his toes and flapped his hands and lined up his toys on top of the safety gate and stuffed his mouth with food and smeared his poop all over the place and screamed at the top of his lungs in the middle of the night and laughed while he ate for no reason and never said a word and never looked at me and dumped things out constantly….I knew.

Going through an Autism diagnosis in 2005 was much different than it is today. Don’t get me wrong, I think it hurts just as much, but I don’t think it’s as scary as it maybe was back then. I didn’t have Autism Speaks in 2005. We had support groups and a few websites, but nothing like today. There were no checklists or resource libraries or The First 100 Day Toolkits after a diagnosis like there are now. There were no Facebook pages, no blogs, no sibling support groups…. or at least none that I knew of, and definitely not available all in one place. And it was the scariest thing in the world. No, it wasn’t a death sentence for my child, and my heart breaks for parents that have to endure such things. But for my child, the thought of him never having friends, or showing love or getting married or living on his own and taking care of himself, or experiencing true emotions, it FELT like a death sentence at the time.

So I did what anyone would do – I grieved. I grieved for the loss of a normal childhood for my son. I was sad and felt guilt for what I may have done to cause this. I was disappointed and scared for the future. I felt like giving up. How would I help my baby? How could I ever handle this? Where would I find the strength to do everything I could for BOTH of my kids to get us through this?

After a few days of feeling this way, I realized I needed to DO SOMETHING. I wasn’t sure what it was, but I knew I had to do something or I would be useless to my family. I went to a support group. This was definitely NOT FOR ME. It was all too new, too REAL. I couldn’t deal with all the emotion and definitely did NOT want the pity. But, from this support group, I learned about an organization that was created to raise awareness and raise funds for research to figure out what the hell causes this. They were Cure Autism Now back then (now known as Autism Speaks) and they were having a charity walk in just a few short months. This seemed so RIGHT to me. This seemed like something I could DO! I joined and started asking friends and family for support. And the support was OVERWHELMING!! My friends all came out. They asked questions about Autism. They asked my family how we were feeling. They gave donations. They showed up to the walk! I literally could not stop crying that day. It was the most love I think I’ve ever felt in my life.

So, I’ve participated every year since. Every year it goes a little differently. That first year, we came out with a whole team. But the next couple years, I went and volunteered instead because I felt I could do more that way. A couple years after that, my dear niece and her friend came out and walked with me while my kids were there with their dad. The next year, friends helped me to throw a fundraiser for Autism Awareness month and came to the walk and even threw a barbeque afterwards for us. Each year, it gets better. Each year, I am overwhelmed at the support I receive – both through donations and on site. Each year, I cry for how many more people are there than the year before. So many of these families are there for the first time and feeling the things I felt that first year. But because of Autism Speaks, they know they have a family. They know they have support tools and resources and people that just “get it” all in one place. I have referred them to friends going through those scary times of wondering if their kiddo was on the spectrum or for those struggling with behaviors that seem just not quite right. Even if it turns out to not be Autism, it gives them the resources to get a diagnosis, therapy, support and help they need – whatever it is.

This year is no different. Not only is my company matching the donations we raise as associates, our department is walking in support of the cause as a team building activity. We’ve raised enough money to get a team village at the walk and several of my co-workers are bringing their families to walk on Saturday. I am completely humbled and excited and thankful for this level of caring and support. I’m excited for them to meet my family and see the amazing families in my Autism Speaks community. I am so thankful for this walk and for the support that my family receives through it. It’s really given me something to work for, to hope for and to be a part of.

Pictures to come in my next blog of what’s sure to be another AWESOME WALK!!

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