I’ve written a lot about how Kaitlyn loves when we have family in town visiting. Part of it is because Amber and I relax the rules a little, but most of it is because she just really enjoys spending time with family.
She loves showing off her collection of Rainbow Magic books.
She loves reading to people about our upcoming Disney cruise.
She loves getting out her games and setting the up on the floor and playing.
She loves all of those things, and so much more, about family visiting. To her, it is a special treat to be at the center of someone’s attention who is not me or Amber.
Mostly, she loves when family visits because she loves family. I am not even certain that it has anything to do with the fact that we don’t have any family here. I really think that if we were surrounded by family, she would still be the same way; Kaitlyn has such a deep-rooted caring for everyone anyway, but with family it seems to go up another level or two.
Which is why Friday and Saturday morning were really difficult on her. While she once again was rewarded with a trip to Nuberri Friday (correction from an earlier post, she went to Nuberri every day with Amber’s mom), she was really emotional during the afternoon. Amber’s mom was packing up her things, getting ready to leave Saturday morning, and Kaitlyn was beside herself. It did not get any better as the evening wore on, and by the time she was tucked into bed, her face was puffy and moist from crying so much. When Saturday morning rolled around, the tears started again. She really did not want Amber’s mom to leave.
During the day Saturday, Amber and I talked about Kaitlyn’s reaction. While we expected the usual crying like she does when my parents leave or Amber’s dad leaves, we were a little surprised that is lasted as long as it did. I think part of it was just having been spoiled for 8 days or so; it’s strange though, because as much as Amber’s mom spoiled her during her visit, she also made sure that she followed most of our rules. I also think that part of it is that Kaitlyn is starting to really understand that her time with family other than us is limited; we know she loves spending time with us, but I think that she sometimes longs for more. Not more time with us, more people to share in the absolute joy she gets out of even the smallest little things.
I know from my perspective, having more people close would be tremendous. Take, for example, next Tuesday. We will be heading down to the Historic Old Capitol Building to attend the Light It Up Blue festivities. It is a pretty big deal to us, especially because Kaitlyn’s Asperger’s does not show up only on World Autism Awareness Day (it is there all the time), and having more support would be great.
Kaitlyn heads back to school tomorrow. Back to her daily routine, back to seeing her friends every day. She starts T-ball Wednesday. The next few months, between school and extra-curricular activities, are going to fly. We have our cruise, and then Kaitlyn’s birthday party (with a new theme), so it will not be until late June that we have to comfort her when family heads home in the morning.
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?
Over the past few weeks or so, I have written extensively about World Autism Awareness Day (here, here, and here), and autism awareness in general. It is an issue that is really close to my heart, obviously, and that I am very passionate about.
Yesterday, however, I had my eyes opened to how many people I consider friends are also passionate about raising awareness. So, I wanted to take a minute to thank them.
Ryan, who I reference on here quite frequently, has been right there by our side almost since day one, and dedicated his blog to raising awareness (check it out here). His support, and the support of his amazing family has meant the world to us.
Sarah, Kaitlyn’s buddy at Miracle, and president of SPAA at FSU, worked extremely hard in getting the word out on campus, and attended (and let us know about) the Light It Up Blue event at our Old Capitol last night. She has forged such a tremendous bond with Kaitlyn in a very short period of time, and we are proud to call her our friend (and we even “claimed” her as family last night for a picture with CFO Jeff Atwater).
And then there is Coach Mike. He happily greets us each Thursday at Miracle, and is part of what makes Miracle special for everybody. He posted a tear-inducing video on his Facebook profile, and even changed his profile picture to a picture of Kaitlyn yesterday. All in the name of raising awareness.
We even had the opportunity last night to connect with Sharon Boyd with Autism Speaks, and I look forward to working with her to help make and keep autism awareness a front-burner issue in our state.
Each of the people I briefly mentioned here has a tremendously big heart. We feel incredibly fortunate to have them in our lives, and are very thankful for everything they do, not just for us, but in raising awareness.
Of course, I could not wrap-up writing about WAAD 2012 without expressing disappointment that the White House did not participate again this year. But there is hope. Being snubbed two years in a row seems to have ignited a fire under Amber (no, she will not be the next “angry blogger”), and she started a Facebook page to campaign the White House to pledge to light up blue next year. You can “like” it by responding to the request I sent you if we are friends on Facebook, or by going to www.facebook.com./lightthewhitehouseblue. Let’s make 2012 the last year that we are ignored.
Wow, what an awesome night! We found out around 3:00 this afternoon that Florida was going to be one of the ten state capitals to particiapte in Light It Up Blue. Immediately, Amber and I knew we had to be there. The crowd may have been small, but the cause is huge.
I am very proud of our state and the fact that we have our Old Capitol Building bathed in blue tonight. Words cannot describe what I feel right now.
We were standing on the steps of the Old Capitol with the Poosers and Sarah, listening to Florida Chief Financial Officer Jeff Atwater read the proclamation about Florida’s participation, and it was hard to keep the tears from welling up in my eyes. To know that there are actually some in our state government that care makes me extremely happy. And while tonight’s turnout was rather small, you can guarantee that I will spend the next 365 days reminding people about next year’s World Autism Awareness Day! To top off our evening, Mr. Atwater gave us a private, guided tour of the Old Capitol Building. What a night!
Well, it is finally here. World Autism Awareness Day is here. And we are feeling blue, and could not be happier about it. I will be wearing my puzzle piece shirt to work today, and have a magnet pin to wear for entire month. Blue will be the color of the month for us, and what an awesome color it is!
I hope you are feeling blue today for Autism Awareness. And remember, it is not too late to head over to your local Home Depot for a blue lightbulb. Only $1.99.