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.
I’ve had this “written” in my head for a little while now, and it has taken me some time to edit. 2011 was quite a ride for us, akin to being on an extreme roller coaster with ups and downs, twists and turns, and stomach dropping moments.
I guess we should have suspected that this year would be an interesting one with how 2010 closed out. October 2010 is when our adventure really began, when Kaitlyn was first evaluated by FSU CARD. That was quickly followed up with a visit to our primary care physician, and our first meeting with the psychologist.
Kaitlyn had her “official” evaluation conducted on January 8, and from there it was a waiting game to find out the results. I was certain that we would receive some sort of autism diagnosis for Kaitlyn, probably Asperger’s, but Amber had her reservations. In the meantime, we still had our lives to lead, and that meant regular shopping trips. We made what turned out to be the best trip we have made to Target on January 22 (more on this later, but I am happy that Amber wore an FSU shirt and that I had Steelers gear on).
On February 1, after what seemed like forever (and because of some very slow mail service), I picked up from the psychologist, Kaitlyn’s results. Amber and I read it together, and it was confirmed, Kaitlyn has Asperger’s. I don’t recall feeling any shock or anything, just relief that we knew and it was now time to plan a course of action. Time was not on our side at this point, because the deadline for school choice was just a month away.
March through May were probably the most stressful months of the year, and perhaps of our marriage. Not only were we dealing with our new diagnosis, the school district was putting up obstacles at every turn, which only served to frustrate and upset me. Through it all, Amber was the steady voice, and it is her strength that helped us survive, and keep me from becoming even more upset. The fight we put up paid off in mid-May when we found out that we were approved for Kaitlyn to go to our desired school. It has proven to be the best fight I could have ever had. Kaitlyn had yet another evaluation in late May, this time by the school district; she must have confused them quite nicely, because she would have another evaluation, this time over at FSU, in July. In the end, and after Kaitlyn having been subjected to so many evaluations, the school district had their answer, and were content. There was one more evaluation to come in July, but it was a routine kindergarten screening, during which Kaitlyn excelled and showed she was very ready for school.
After her third evaluation, by the FSU Multidisciplinary Center, we learned that Kaitlyn has an IQ of around 116, which helps explain why she gets bored with some of her assignments and homework.
The spring and summer were not just about stress for us, though. We began our participation in Miracle Sports in March, and my job at the time was to be Kaitlyn’s “buddy” during the baseball season. We had such a great time during our baseball season that we went with a group of athletes to Dothan at the end of May for a Miracle Sports tournament. It was an amazing trip. The summer heat forced us inside for some basketball, and it was during this season that I was dropped by Kaitlyn as her “buddy.” This arrangement worked out well, however, because it allowed me the opportunity to work with other athletes and at least attempt to become more involved.
Kaitlyn started kindergarten in August, and before we even got to the first day, we had a chance to get Kaitlyn acclimated to her new surroundings when her teacher invited us for a visit. That further justified to us what we dealt with earlier in the year, and helped Kaitlyn with the transition. Her first semester in school has gone great. Kaitlyn has really adjusted well and enjoyed her one field trip and riding on the school bus for it. The semester has been filled with mostly “green fox” days, but has had its share of “yellow fox” days, and one “red fox” day. Kaitlyn readily shares with us what color fox she was each day, and knows that we expect green every day. She has had two days during the semester when she has had lunch with some very special people, once with my parents on Grandfoxes Day, and one in December when her “big sister” and BFF Jen surprised her. That surprise made her day, and helped extend a good week that had followed a very rough week.
Really and truly, we could not have made it through this year without some very important people. Amber has been a rock for our family, and has been supportive of my efforts every step of the way; I know this was a stressful year for us, but I can honestly say that it only helped to strengthen us as a couple and as parents. I am thankful every day for her. Our parents have been supportive of us this year as well. While they may not have initially (and possibly don’t fully grasp yet) understood what Asperger’s is, or what it means for Kaitlyn and for us, they have come a long way and I am happy about it. Kaitlyn’s new “buddy” Sarah has been amazing. She is the president of the SPAA group on campus, and they are a group that I am flat-out impressed with. She has really taken to Kaitlyn, and Kaitlyn just adores her, and we look forward to strengthening their bond and our friendship.
Earlier, I wrote about our trip to Target in January, and the impact it has had on us has been unmeasurable. On that trip, we literally ran into a family that we have a tremendous amount of respect and love for. I am not usually one to make friends at Target, but I am so glad that we went that day and that our choice of clothing caught Ryan’s attention. The Spragues (and the Rudziks) have been a big blessing for us. They have accepted us into their family and have been trusted friends to us, and Kaitlyn simply adores their four boys (and I am fairly certain the feeling is mutual). To say that their impact on our lives has been amazing would probably be an understatement. To be able to connect with a family that shares so many of our same values has been a top highlight of our year. We feel right at home with the Spragues, and are better for knowing them; the best part is that they are now stuck with us, but I don’t think they mind at all.
I don’t know what 2012 will bring, but I anticipate it will have some roller coaster moments. The highs may not be as high, and the lows may not be as low, but there will be moments for sure. If 2011 was the extreme coaster, 2012 may be a kiddie ride for us; hopefully it is not the tea cups because I am not a big fan of being dizzy. I know that whatever 2012 throws at us, Amber and I will be ready. Kaitlyn will have plenty of fuel to provide me with things to write about, and I hope you continue to come along with us in more adventures in aspieland.
Happy Thanksgiving. I have come to realize that I have a lot to be thankful for.
I am thankful to my amazing wife and wonderful daughter. Amber is the most supportive person I know, and Kaitlyn continues to “wow” me every day.
I am thankful to my parents and my brother. They have always stood by me, even when they thought I was wrong.
I am thankful to our friends. Jen has always been willing to help with and hang out with Kaitlyn. The Spragues came into our lives just a our world was about to change, and they have been a blessing to us, and their boys have been a blessing for Kaitlyn. We are thankful to have Angelica living back in Tallahassee, too.
I am thankful for the Miracle League and all of the volunteers. More so, I am thankful to Kaitlyn’s #1 buddy Sarah and all of the SPAA members. They are awesome.
I am thankful that Kaitlyn has taken an interest in running. She beat me to the finish line in our first race in the spring, but we are having a rematch today at our local Turkey Trot. I am hopeful that I can provide an update later and brag that I beat her, but I doubt that will happen. We have a few more races coming up together, starting in January with one at her school, then one in February in conjunction with the Breast Cancer Marathon, and then one in April for Autism Awareness.
I am sure that there is somebody that I left out on here, but rest assured that I am thankful for you, too.
Nope, that is not a type-o.
Tonight, I was asked to speak to Students Promoting Autism Awareness (SPAA), the student group on campus at FSU dedicated to raising autism awareness on campus. Through Miracle Sports, I had been fortunate to interact with many of the members, and Kaitlyn’s #1 buddy at Miracle is the SPAA President. I had the good fortune to attend another SPAA meeting earlier this year, but this is the first time I had gotten to speak to the group.
The topic for tonight was a parent’s perspective on autism and Asperger’s. Basically, I shared our experience from day one. I shared the frustrations and the victories we have had in our dealings with the school district, and was open and honest about the challenges we face every day with Kaitlyn.
What I enjoyed most is taking questions from the group. To me, I felt it would be more effective and informative to have the group ask things they were interested in knowing, rather than just hear me share our experiences. And there were a lot of great questions. To be able to answer the questions and possibly further pique the interest of the members was amazing. I invited the members to spend some time with us and with Kaitlyn if they wanted to, just so they could really get that “hands-on” experience.
I am really impressed, though, about the level of enthusiasm from the group. These students get it. I cannot thank them enough for what they do on campus and throughout the community. They have a number of events that they participate in each year, and a good number of the members volunteer at Miracle. I continue to be excited about the future because of these students; if they continue to educate themselves and the community, and be advocates for autism awareness, people like us and like Kaitlyn are the real winners. I hope to be invited back sometime, if even just to sit in on their meeting and marvel at what they are planning and what they have accomplished; I know Kaitlyn would love to join me sometime as well, especially since she will get to see her buddy.
I hope that SPAA continues to grow in enthusiastic membership. Just as we can never have too many volunteers at Miracle, there can never be too many advocates for individuals with autism.
“Do you believe in miracles?…YES!” –Al Michaels’ call as time expired and the US hockey team beat the Soviet Union in 1980.
I’ve written a few times about Miracle Sports, and if I had to answer the question, I too believe in miracles. Namely, I believe in the miracles performed by participation in Miracle Sports.
I have seen athletes with all types of disabilities experience the joy of baseball and basketball this year. The joy of playing these sports on adaptive fields that allow them access and opportunity. If you have not seen the impact Miracle Sports has on our athletes yet, I would encourage you to come out on Thursday and you will be hooked. If you are not in Tallahassee, try to find the league closest to you and check them out…you will be happy you did.
I have seen Kaitlyn grow from being completely attached to my hip for the first few weeks, to running free around the field with her new favorite buddy. Miracle Sports has done so much to help Kaitlyn grow. As I mentioned, she has her favorite buddy, but she is so much more open with some of the other volunteers than I would have ever imagined. It is wonderful to see how so many of the volunteers have warmed up to her and that she has warmed up to.
Tonight was our big end of the year game, and our athletes took on the FSU baseball and softball teams. To see such a large group of student-athletes give their time to spend the evening with us speaks volumes about their character. Unfortunately for them, I am pretty sure that Team Miracle came out on top tonight.
We have a few months before our next season starts, and I cannot wait, and I know Kaitlyn cannot wait either, to get back out to the field and play. Next up: soccer.