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!
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?
Today marks the end of Autism Awareness Month. Another April in the books, and another April gone with the White House showing zero support for Autism Awareness. There’s always next year, I guess (click here to join the National Campaign to Light the White House Blue).
The month was a success, even without the participation of the White House. The state of Florida helped to raise awareness by lighting our historic Old Capitol Building blue on April 2.
Like every family on the spectrum, autism awareness does not end when the calendar turns to May. Promoting and raising Autism Awareness is a daily goal in our house. We live with autism every day, and are dedicated to making Kaitlyn’s life better and knocking down barriers in the process.
The Centers for Disease Control released a report today that indicated that 1 in 88 children are diagnosed with autism spectrum disorder. 1 in 88. That is a staggering statistic. And it is probably a low number considering it was reached by surveying only those individuals that are receiving services. Kaitlyn, like a lot of high functioning autistics/aspies (at least I imagine this is the case), does not receive any specialized services and would not count toward that figure.
The new diagnosis figure represents a 78 percent increase in just five years. Some of this has to do with doctors having a better understanding of autism spectrum disorders, and also with improved testing and evaluation methods. I wonder what the figure would be if more doctors chose to not be lazy and settle for an ADD or ADHD diagnosis instead of further testing to determine possible ASD.
If you read these entries on a regular basis, you may have been wondering why I have been so persistent (click here or here or here) about World Autism Awareness Day (April 2) and Autism Awareness Month (April). That number is why. The more awareness that is out there, the better it is for people with ASD and the ones who care for them and love them. Awareness increases education, and education increases knowledge.
If you have not purchased your blue light bulbs for April 2, please go to Home Depot this weekend and do so. And I promise, you can use them for the whole month of April and all year if you want. Just think, you might get a chance to educate someone when they knock on your door to ask you about your blue light.
A few days ago, I shared the letter that I wrote to President Obama asking that the White House be bathed in blue for Autism Awareness Day in April. I received a response, sort of:
February 23, 2012
Thank you for taking the time to share your experience with me. I am so glad to learn that you have benefited from the help of our Government.
Each day, I meet with my advisors to make sure we are doing all we can to support Americans during these difficult economic times. It is encouraging to hear stories from citizens who are getting the assistance they need.
As we work to bring relief to families and individuals — from providing COBRA and unemployment benefits, to getting credit for small business and preventing foreclosures — there is still more work to be done. Please know that the trials and triumphs of hard-working Americans motivate my Administration to work even harder to overcome the challenges before us. Together, I am confident we will emerge stronger than before and with a renewed promise of a better future for all.
Thank you again for your thoughtful letter. To learn more about my Administration, please visit: www.WhiteHouse.gov. I wish you the best.
|You are receiving this one-time email because you contacted the White House about a particular issue.
For information on President Obama’s 2012 State of the Union Address, please visit: www.WhiteHouse.gov/SOTU
If you are interested in receiving regular updates from President Obama and senior White House officials, please visit our subscription page to sign up: www.WhiteHouse.gov/get-email-updates
The White House 1600 Pennsylvania Avenue, N.W. Washington, D.C. 20500 202-456-1111
Here is how I read the letter:
This is an automated response. Like most of America, I do not understand autism and really have no deisre to make an effort to understand autism. I don’t think that I will be lighting the White House blue for autism, but check it out on March 17 and it will be green for St. Patrick’s Day.
President Barack Obama
An automated response just won’t cut it. Autism Awareness Month is one month away.