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 firstname.lastname@example.org), 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 (email@example.com).
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?
Two weeks is not a long time. It’s a pay cycle for most people. A stint on the disabled list for a MLB player. And the amount of time until World Autism Awareness Day.
April 2 is right around the corner. And while there has no indication that the White House will be blue, our house wil be.
Autism Awareness in our house is not a one day event. It’s not even a month-long event. It is an every day event.
If you have not yet pledged to “Light It Up Blue,” you still have time. Don’t waste another day. We got out 2012 WAAD shirts today.
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.
Today, I submitted a letter to President Obama to request that the White House participate in this year’s Light It Up Blue campaign to raise awareness for autism. I asked for a response, but am not holding my breath for one. My sincere hope is that the administration will opt to light the White House blue and allow autism to join the ranks of causes that have been honored, right there with AIDS and breast cancer. Even St. Patrick’s Day has made its mark.
Below is the text of the letter that I sent:
In 2011, Rockefeller Center, Terminal Tower (Cleveland), the Prudential Building (Boston), the Empire State Building, and the Eiffel Tower joined numerous other monuments and buildings in Lighting It Up Blue for Autism Awareness Month. Sadly, the White House did not. As a parent of a daughter with autism, I was very disappointed. My sincere hope is that the White House will be blue this April, allowing autism to join AIDS Awareness, Breast Cancer Awareness, and St. Patrick’s Day in being honored. I know times are tough and the budget is tight, but I hope that there are funds available to purchase some blue bulbs from a local Home Depot. If not, I would be honored to purchase them and send them to the White House to be installed.
I am preparing myself for autism to be ignored again this year. Disappointment seems to come standard when you attempt to educate people who want to ignore autism.
Frustration and disappointment are not strong enough words to describe how I feel sometimes. There are times when I could absolutely just pull my hair out, if I had any, that is.
This year, the White House has brought awareness to many things. It has been green for St. Patrick’s Day. It has been pink for breast cancer awareness. It has displayed a gigantic red ribbon for AIDS awareness.
And it has been blue for autism awareness.
I totally support raising awareness and promoting advocacy for breast cancer awareness. Breast cancer is deadly, and I have seen first-hand how it can break down one of the strongest people I know as she watched her mother succumb to it. I run in the 26.2 with Donna each February in honor of my friend’s mother.
Prevention of HIV/AIDS has been a goal of our great country for about 30 years now, and if hanging a giant ribbon on the White House helps raise awareness and helps to teach people about this deadly disease, I am all for it.
Where I do have an issue is any sort of special event at the White House for St. Patrick’s day. It is not that I am anti-Irish; far from it…I have been known to in the past partake in a green beer or two on St. Patrick’s Day. I just don’t understand why the day deserves special recognition at the White House. Are we trying to make people more aware of the color green?
I guess maybe it boils down to just plain ignorance. Maybe the President just flat-out does not understand autism, so he chooses to blatantly ignore raising awareness. Sure, he issued a proclamation for World Autism Awareness Day, but let’s be honest, someone in the press office wrote the thing and he just signed it. Maybe the autism community is just not loud enough, making us easy to ignore. Maybe we are ignored in hopes that we will go away.
Who knows, maybe the White House will be blue next April for Autism Awareness. I make this gesture of goodwill to the President: if you buy the blue bulbs, I will travel to Washington and install them myself. Better yet, since the government would probably pay $19,000 per bulb, I will stop at a Home Depot on the way and buy some bulbs and install them, and I won’t even ask to be reimbursed. I give it about a 50/50 shot that the White House will be blue in April, because it is, after all, an election year. But I will humbly submit this request ahead of time to President Obama: please do not pander to us to get a vote; autism was not important to you in 2011, don’t make it important in 2012 hoping to secure a few extra votes. We are not stupid. Maybe I am just being overly sensitive to this whole issue and should let it go.
It saddens me that blue was missing from the White House in 2011. Too many people turn their backs on autism because it is an “invisible” thing, and learning about such a complex diagnosis would take too much time. I for one will continue to advocate for autism, and educate myself, and share with anybody that reads this. I will not turn away from autism because it is difficult to understand, and if you have taken the time to read this, I would ask that you do not turn away either.