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.”
I don’t often notice many of the magnets we have on the refrigerator in our kitchen, especially the ones on the side of it. Collectively, they serve as a placeholder for pictures, calendars, and camp and school agendas.
Then, the other day, I actually took the time to notice two identical magnets that we have on the side of the fridge. I had no clue of when or where we got them, only that they were there (Amber later cleared up the mystery for me). The design on the magnets is that of the puzzle piece Autism Awareness ribbon (shown at right). On the ribbon, there is a message, and it states, “Think Autism, Think Cure.” It’s the message that really got me to crafting this entry today.
To start, let me be clear and unequivocally state that it is my belief, and Amber’s belief as well, that autism (and thus, Asperger’s) is not something that can be “cured.” Cures are for colds, the flu, and other diseases, and autism is not a disease of any sort. We also do not subscribe to the conspiracy theory that autism is caused by mercury in vaccines. Lastly, even if there were a “cure” for Kaitlyn’s autism, we would not explore it for her. Call us unfit or neglectful parents if you want, but to assert that anybody with autism would be better off “cured” is disingenuous at best. We love and accept Kaitlyn for all that she is, and pursuing some “cure” would tell her and us that we have a problem with her having Asperger’s, and we most certainly do not.
I do, however, think that the organization who sent us the magnets (it turns out that at some point I had expressed interest in attending an autism conference and as a result, was sent the magnets. Had I known that the focus of said conference, which I did not attend, was to try to raise money to find a “cure,” I would have never even expressed interest in the first place) is on to something. (That sentence is not nearly as contradictory as it appears!) Maybe there is a “cure” for autism after all, but some people have just been taking the wrong approach. Maybe those most in need of curing are those who remain blissfully unaware of what it is like to be someone with autism, or to be someone who cares for someone with autism. Maybe the “cure” for autism is blogs like this, or like my friend Ashley’s, or like many of the others out there.
Think about it for a second. There is no better way to “cure” the neurotypical folks out there than to raise awareness. Give people insight to the ups and downs of being someone or living with someone who has autism. Give people a chance to see things from the perspective of those they quickly want to cast-off or call “Rain Man.” Maybe the cure comes in the form of a parent of one of Kaitlyn’s classmates reading this and expressing to their child that, while Kaitlyn may sometimes be socially awkward, she is a sweet girl, and all she needs is some patience and understanding. From that patience and understanding comes acceptance, and the foundation for a cure is laid.
Who knows, I could be way out of my mind in even publishing these thoughts today (some will claim that I lost my mind a long time ago), and I am fairly certain that the approach I suggested is not new or unique to me one bit. But, that does not mean that I am not on to something today.
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.
In case you have not figured it out yet, I am pretty hell-bent on raising autism awareness at every opportunity that I can, and also getting the word out when events are happening. Like the event that is being held today at the Old Capitol Building in Tallahassee.
Major League Baseball and its 30 teams are hitting a home run when it comes to raising awareness. Each team is going to dedicate one home game in April (or at a later date) to help raise awareness.
Here is how the clubs will go about doing their part:
Many of the MLB Autism Awareness games throughout the league will provide special opportunities and a safe, friendly environment for families and individuals affected by autism. Clubs will recognize local families during pre-game ceremonies, and members of the autism community will participate in various traditional baseball activities, including throwing out the first pitch, singing the National Anthem, announcing “Play Ball!,” singing “Take Me Out to the Ballgame,” or performing “God Bless America.”
How cool is that?
You can find out when your favorite team is holding their event by clicking here. My team, the Red Sox, are holding their event on April 28.
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.