Why I "Light It Up Blue."

April is Autism Awareness Month and TODAY, April 2nd, is World Autism Awareness Day. Every year I ask everyone around me to help LIGHT IT UP BLUE for a very special reason. My nephew was diagnosed with Autism when he was about 2 years old. In case you don't know, Autism affects 1 in 68 children and boys are FOUR TIMES more likely to have autism than girls. Chances are you know someone with autism or know someone who has a child with autism.

Today people from around the world light it up blue to show their support. Landmarks around the world go blue for the night (see pics below). And it may seem like a small gesture to wear blue or change your porch light to blue, but for those who are part of this amazing community it means more than you can ever know.

Every year, I ask my sister-in-law write something for me to share. She says it better than I ever could. 

Day 1 - Evolution 

6 years. It's been 6 years, 4 months, and 21 days since diagnosis.

This may seem like a weird thing to track. But, to me, it's when everything... kind of fell in to place. While at the same time... in that moment, we were (as he was already 2 and a half years old) completely knocked off our rocker and basically told to start all over again.

It's been an intense, beautiful, debilitating, freeing, educating, splice of what you think life should be, kind of life. But one that is creatively and on the fly, adjusted to better accommodate our family. And looking back (and forward), I feel I wouldn't change a thing.

We've seen such an amazing level of progress throughout the years. Not only with our little guy, but with the amount of awareness and acceptance that our world has shifted to now include, and my heart just feels honored to be a part of this true evolution of man.

However, while I feel blessed to be a part of it, I also am not unaware of the fact that we still need more. Things like better services and therapies for individuals with Autism. Or an education system that not only fully supports them, but includes teaching ALL students how to better understand what it entails to actually HAVE Autism so that their peers aren't intimidated or confused, and instead welcome and support them. We need to develop a better way to help support and teach our children and adults with Autism, how to understand their differences better while learning to be confident and love themselves. How are we helping our children with Autism manage these beautiful skills... and in some cases, the not so beautiful symptoms of it? We should never focus purely on just what we can do to make the world easier and more inclusive for them, without first, making sure they know that we respect and admire who they are and what their Autism includes, while also making sure to avoid having them feel any less than equal.

We need to focus more on what they, as adults, will benefit from and what we can do now to help them become successful, independent adults, without judgement and with a support system that understands and welcomes them! This is the change we still need to work on. 

I see glimmers of hope, but we still need more.  

I can't for a second ignore the change that has already occurred, as that would be almost criminal. And for any part in all of that that you may have partaken... I sincerely thank you. But this year, I'm hoping to help continue to open a door into where we need to go next! 

Once again,  I'd like to re-post my Day 1 from 2013.

Day 1 - 2013

“A year ago tomorrow, sometime after dark, I got into my car, backed out of our driveway and slowly drove around our neighborhood. It was as though I was being driven by an inner force to find another house like ours. It took me about 20 minutes of slowly going up and down each street, looking at each house… still not finding what I needed, until I came to almost the last street. There it was… a two story green house with cream colored shutters about 6 blocks from our own home………..with a blue light on their porch! I cried. Roman had only been diagnosed about 5 months earlier and I was still in that numb/unaware/afraid /hopeless/weak/sinking part of it all. I’m still there. Most mothers of children, who have special needs, still are on some days. They say you have to stand taller and become your child’s voice or advocate. I agree. But it’s easier said than done, especially in the beginning. I sat there in my car and stared at that house. I didn’t know if there was an autistic child in that home, or if they were showing support for a friend of a friend, but I cried. I felt like I had been alone for so long. My Husband was going through it all with me too, but he was stronger…or maybe I had just read too much on the subject and had made myself weaker. In any case, I was weak. I went home after finding that house and slept better than I had in a while. I remember waking up the next morning and feeling like I wanted to go to that house and just be there. Not in a noisy way, but in a “maybe they drove past my house last night too” sort of way. I never met them. They may not be there this year. I know I’ll drive by again though.

You see… I’ve never technically announced that my son Roman is Autistic publicly like this. I felt like THIS right here would be weird. How do you publicly announce it like it’s something you want people to “like” or even comment on, when you really don’t know how you’ll respond to it? Some days I could (can) talk about it, and some days, I just couldn’t (can’t), and how I responded to it was (is) sometimes literally out of my control.

So, I felt like a good ole fashion game of ‘telephone’ through family and friends would just be the best way to get it out there. It’s not like I had to let everyone know…..and yet my almost 4 year old son is non-verbal. He doesn’t respond to his name about 80-90% of the time, and he likes the sound of his amazing voice even with no words…I do too 😉 He’s obsessed with DVD cases and books, but only for their fine print and most importantly, bar codes. And when we’re out, if he spots a fire extinguisher he will get to it by any means possible. Again, for the fine print. There’s so much more.

So last year he was 2…… It wasn’t as noticeable that my toddler wasn’t talking, or that he didn’t respond to you. So I had sold myself on the idea that explaining it to everyone wasn’t necessary and we’d just continue to play “telephone”. Then in May, I did something I still feel (although it was amazing, and I love my circle of people for it) was so stupid. I started a sponsored team for a 5k walk for Autism. “Team RAD” (in case you don’t know, my sons initials spell RAD) I don’t look down on these sorts of fundraisers in any way, shape, or form, and support them wherever possible. However, the reason I felt it was so stupid (on my part) was because I was in no way ready for that. I had a team of over 20 people there, and custom shirts made. I dressed the part and was my usual crazy self-trying to make jokes and break the mood…..and it was working. And then we went to register. When the woman behind the counter asked what “Team RAD” stood for, I looked at her, in front of my team and everyone around us and said “my son”. I bit my lip HARD….and then while she grabbed my hand and said “GOD BLESS YOU” with her head almost bowed as if in prayer…..I cried…..and walked away saying thank you as fast as I could. It was the first time I had really publicly said it out loud. 

I raised a lot of money for that walk. It was in no way pointless, and it was an amazing event….I just wasn’t ready.

So here I am, announcing it on Facebook. Why? Well, I’m still not ready, and yet, I’ve got this awesome little dude over here that LOVES to cuddle. Smiles 99% of his day. Who could take all of you down with his skills on an iPad. Who reads, yes READS before he can even speak. Knows his alphabet.. capital and lower case letters and can match them to each other. Can count 1 to 10. Loves a car ride, Target, and Best Buy (with Dad). Who can do a puzzle App like no one’s business. Who finds the simplest things SO exciting when all of us pass these things up by mistake because we’re moving too fast. Who loves his sister and watches her like she’s the best thing there ever could be. Who loves the water and swimming and ice cream cones... and who IS and WILL BE an amazing person that you all should keep an eye on. He’s bound for great things!!!! If I just sit here and say “I’m not ready…” how, for the love of God, am I helping him in any way? I’m his Mom! I’m THEIR MOM! I will do anything it takes to lift them to their highest, and if stepping outside of my own fears on this, is what it’s going to take... here I am!

When my husband and I first found out that our son was autistic, I spent too much time educating myself on it via website after website, because I honestly had no clue what autism even was. ~No clue~ So, for those of you who might not be aware of it either, I thought my daily FAQ’s might help some. The number of children diagnosed with Autism is rapidly growing, and it truly is something that needs more attention. Not just because of my son, as we’ll manage and we’ll be better than OK. But for all of the families who are dealing with these same emotions, daily added stress, and financial struggles and who have little to no support through this. It is scary. It takes a lot out of a family to go through something like this. So knowing that I’m maybe helping to educate you on something that you WILL without a doubt come across in the near future, so that you might understand it more, and then maybe be able to actually share it with others and support those people you meet, who need that help, even with just your understanding. Then, well, it’s a start.

I’ve got my blue light bulb ready again this year and ask that you “light it up blue” tomorrow, and for the month of April, too. You see, there may be people (newly diagnosed, or just lost in it all)…..driving around tonight, searching for that light. It’s so easy…and more helpful than you could ever imagine. Share….suggest…support! Something. Please! Not just for me, and my little RAD man, but for this corner of our special needs world!

If you made it this far, thanks for reading :) means a lot."

 
 
Rose

Rose

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