A week from today, April 2, is World Autism Awareness Day. Around the world, houses, like ours, and landmarks will be bathed in blue to help raise awareness for autism. As we have in past years, Amber and I will surely wear blue to work, and we will probably make sure Kaitlyn wears blue to school.
I have written a lot about World Autism Awareness Day in past years (here, here, here, here, and here) both happily sharing our experiences and of places that have gone blue for the day, and also of disappointment in the lack of participation by others. Those emotions are sure to be there again next Thursday.
For us, autism awareness is not a one-day or one-month thing, and autism does not leave our lives on April 3. Amber and I do everything we can to raise awareness every day, and by reading these entries, you are helping, too. And we thank you.
The public’s collective understanding of autism and those on the spectrum, like Kaitlyn, is getting stronger and stronger. There is still a long way to go, but each baby step brings us that much closer to understanding and acceptance.
Those on the spectrum are blessed with so many amazing attributes. Kaitlyn is one of the most caring and compassionate people I know; she has a huge heart for everyone, and truly sees the best in everyone. She is extremely smart and driven to succeed in school. She has a love of the world around her, and a deep commitment to making the world a better place. Her love of dolphins is admirable, too. Kaitlyn does have challenges, too, and chief among them is low self-esteem and self-confidence, which Amber and I work constantly on improving in her. She is coming to understand her Asperger’s more, and that scares her sometimes, which just crushes Amber and I.
We are fortunate to have a great support system in place here, and that was very evident when I shared Kaitlyn’s angst earlier this month; the support we received from our Facebook friends was tremendous, and the comments on there meant the world to us.
While we are surrounded by so many great people, not every family in our situation is. Every day, they face uncertainty and are filled with doubt that they are doing a great job. If that is you and you are reading this, you are doing a great job just be being there for your loved one on the spectrum; if you are the family or friend of someone who cares for someone on the spectrum, reach our to them and be there for them. Encourage them.
Autism Awareness is about more than just one day, it is the continued support of those on the spectrum and those who devote their lives daily to ensuring that their loved one is not slighted or doesn’t live in fear of being “different.”
Kaitlyn, Amber, and I made our way to the Old Capitol Building yesterday after work, excited that Tallahassee and the state of Florida would be doing their part for autism awareness. As we were walking up to the courtyard area, we noticed that the blue lights were already on, and that just made it even better.
It’s hard to categorize the event as anything but a success, especially knowing that not every state capital was participating, and knowing that the White House would not be blue, either. So when we learned that CFO Jeff Atwater was not going to be able to make it to “officially” announce the state’s participation, we were really not disappointed at all. The most important part was that the state was participating, and we are especially thankful to CFO Atwater’s office in arranging the lighting again this year.
We sort of milled around and talked with the other advocates who showed up, with all of us really just happy to be there. The crowd grew from last year, and that was pretty cool, too. It is really heartwarming knowing that someone like Sharon would bring her son (who has autism) up from Port Charlotte, just to see a building bathed in blue; she made the five and a half hour drive last year, too. The fact that she would make the trek, and that she is planning for next year’s trip already, tells me how important advocating for her son is to her; I know the drive was difficult for her to make, but I know she would not have missed it for the world. Hearing her talk about the big plans she has for the future and direction of her non-profit was inspiring. Talking to someone like Paula, who came out to show her support was wonderful, too.
For people who advocate for or care for someone on the spectrum, however, last night was really just a new starting point. Autism does not go away for us the other 364 days of the year. We don’t light our houses blue for one night and put the bulbs away until next year. We fight to raise awareness and make the world more knowledgeable on a daily basis.
I think Amber said it best (she probably didn’t realize I was listening) when she said that we were there because autism awareness is important to us. Every day, Kaitlyn is faced with an array of challenges, and every day, Amber and I have to “answer the bell” and be there for her, and we do it proudly. The hard days, and there are plenty, are well worth it because we are making a difference.
The crowd this year was bigger than the crowd last year, and it is my hope and my goal that the crowd next year be even bigger. It would be great to see even more of our family and friends at the event next year, and even better if we could somehow work with CFO Atwater in making the event even bigger.
Yes, I’m blue.
No, I am not talking about the George Strait song (although it is a really good song).
I’m talking about being blue to kick off Autism Awareness Month, of course. I’ve got my nice blue shirt on, ready to go. Amber wore blue to work today, too. Our house will have shades of blue starting tonight as well, thanks to our blue porch light and the blue flood lights I installed by our garage this weekend. I guess you could say we are kicking the month off in a big way.
Speaking of being blue, if you are in the Tallahassee-area tomorrow (April 2), the Old Capitol Building will be going blue at 6:30. We will be joining other advocates and caregivers around 6 in what we hope is becoming an annual tradition.
If you are not in the area, check out the Light It Up Blue website for buildings in your area that are going blue, or stop by a store and pick up a blue light for your house (I got the floodlights at Wal-Mart, and used our blue porch light we bought last year at Home Depot).
I am not holding my breath that the White House will participate, but instead of dwelling on that, I will focus on the baby steps that are being taken at the state level.
If you are in the area tomorrow, I hope to see you tomorrow evening!
A few weeks ago, I wrote about my efforts to get in touch with state government officials, namely Governor Rick Scott and CFO Jeff Atwater concerning the participation of our Capitol Building in the Light It Up Blue worldwide event April 2. I was contacted on Twitter by Mr. Atwater, but still had not gotten confirmation of the event, or any details.
That is until this weekend.
Completely out of the blue (no pun intended), the person who was really the driving force behind last year’s event, Sharon Boyd, commented on my post Seeing Blue?, with some great news. Florida will be participating again this year. This year’s event will be held on April 2 at 6:00, with the lighting at 6:30. Sharon has more about the event on the Facebook page she created for the event, and you can click here for more details. If you are in the Tallahassee area next week, we would love to see you out at the event. Our goal, as Sharon pointed out in her comment, is to make this a yearly tradition and to continue to have it grow. The more awareness we raise about autism, the more educated the general public will be, and that is better for everyone.
If you cannot make it to the event, you can do your part to raise awareness by lighting your home or office blue.
I wasn’t sure if I would even write this entry at all, or what shape it would take if I did write it, until earlier this morning. Honestly, while we will surely be participating in lighting our house blue during the month of April for Autism Awareness, I was not sure that our constant calls to action were being heard by too many people at all. Yes, some friends and family have been on board, and Amber and I really appreciate their participation and support of Kaitlyn, but I guess maybe I had hoped to reach strangers. It turns out, I just might have. And even if it is only one, that is a start. I was checking my Twitter feed this morning, when someone who follows me (and who I now follow) inquired as to whether or not our Capitol building would be blue again this year; I told her that I was not sure, but that I would try to find out.
Last year, the Light It Up Blue event in front of our Capitol building seemingly came together at the last minute. I only found out about it the day of the event, and I think that is true for the few other people who showed up as well. While we were proud to be there, and we have a copy of the proclamation on our wall at home, Amber and I both wished there had been more people there. Amber started a Facebook campaign to help drive people to petition the White House to participate, and we have gotten quite a few “likes” on the page.
I could not find any information as to what Florida was doing, so I did what any motivated caregiver/dad would do. I started making phone calls. Since our state’s CFO, Jeff Atwater, attended the event last year, I started with his office. As expected, it is next to impossible to talk to anyone on the phone at any level of government, so I resorted to emailing him (you can email him at email@example.com), and also contacting him via Twitter. I am still waiting for a response from his office. Next up, I figured I would try the office of Governor Rick Scott. Same result on the phone, so I emailed him (firstname.lastname@example.org).
And because I am not content with contacting our state government, I also decided to visit the contact section of the White House’s website (here) to fill out their generic form. My message to President Obama was pretty straightforward, and it was my usual request to have the White House participate. I also included that I have now contacted the White House three years running, and yet to even receive a response (and of course, no participation either), and asked that autism would be something they would help raise awareness about (I included a reminder that the White House has gone pink for breast cancer, red for AIDS awareness, and even green for St. Patrick’s Day). I am not going to hold my breath for a response from the White House, or for the White House to be blue on April 2, though.
My sincere hope is that one day, people will at least have a better understanding of autism and those on the spectrum. There is nothing “wrong” with those on the spectrum. I know that an autism diagnosis can be confusing because Kaitlyn confuses and confounds us every day. I also know that Amber and I love her unconditionally, and that there is nothing we would not do for her, because we know that her having Asperger’s will put so many roadblocks in her way as she grows up; we know that some people will never understand her, and that some people will never accept that she does not fit their mold of what they envision for her. We also know that understanding is gained through awareness and education, and when places like our Capitol building, the White House, the Empire State Building, or the Eiffel Tower turn blue, if even for a night, the natural curiosity of people will lead them to learn more about autism and those with autism.
Awareness, however, does not start with those public places. Awareness starts with me, with Amber, and with you. Will you make a difference this April?