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.
You see them everywhere. They come in a variety of colors. The advocacy bracelet is everywhere these days.
I wear one of my blue autism bracelets rather frequently (I have one from Autism Speaks and one I picked up at the FSU Autism Center). Before today, I had not paid much attention to the writing on the one from FSU CARD. It has 5 words imprinted: Expand, Express, Embrace, Engage, and Enable, and I started to think what they meant to me.
Expand: I think being an advocate for autism means expanding knowledge and awareness. I have tried to continually expand what I know about autism, and try to relay that to friends and family.
Express: As a caregiver and self-proclaimed advocate, it is on me to express challenges, obstacles, and victories that we experience with Kaitlyn.
Embrace: Amber and I have had to fully embrace the quirks and traits that Kaitlyn has. We have to show patience when she starts to drive us crazy, and understand that she is an amazing child that will educate us if we let her.
Engage: We have to be willing to engage family and friends and be willing to discuss autism and Asperger’s. We have to understand that people do not have, in general, a lot of awareness about autism, so the more we engage them, the more we will raise awareness.
Enable: If you have been following this blog for any length of time, you know it is my goal to to whatever is necessary to enable Kaitlyn to be successful. She has challenges and obstacles and it is my job, and Amber’s job, to fight to make sure she gets a fair shot.
I don’t know if I live up to my expectations for each of these 5 areas, but I try very hard every day. I hold myself to high standards in these areas, and can improve in all of them.
Yesterday was a strange day news-wise. The news started off bad when I checked the mail during lunch. We received some mail from the CARD center at FSU, so I eagerly opened it, thinking it was a schedule of upcoming events, etc. Boy, was I wrong. The letter, from the Executive Director, outlined that their budget for the upcoming year had been slashed by 20.2%. Wow.
What this means is that the CARD centers, centers that help families like us start the process of receiving an evaluation, and offer continuing services through a variety of educational programs, will have to significantly reduce the services that are offered. This is a tremendous blow to individuals with autism and their families. A significant reason for the reduced funding is Florida’s governor’s disdain for people with disabilities. He has made plenty of efforts to reduce or elminate funding to pretty much anything that has to do with disabilites (and also education). The 20.2% budget decrease is just another example of how little he cares for those with disabilites, and I suspect he even knows that autism is a disability. Because of the tremendous people at CARD, I suspect the budget reduction will have very little impact on those that come there for services. Sure, some of the educational stuff will be self-paced online sessions, but losing the interaction with the staff by those receiving services will hurt. We have had nothing but positive experiences with CARD, from Kaitlyn’s initial evaluation to them helping translate some of the clinical diagnosis into English for us. They will still rely heavily on students that are studying psychology to come there and help out, and that aspect won’t be touched by any budget reductions.
There was, however, a bit of good news yesterday as well. Given the governor’s disdain for both people with disabilities and education, I held out little hope that he would sign HB 1329 into law, even though it cleared both chambers during the legislative session this year. HB 1329 expands eligibilty for a McKay Scholarship for students in Florida from requiring an Individualized Education Plan (IEP) only to allowing students on a 504 plan to be eligible as well. What this means is that a a student will no longer have to be receiving services from a school district to be eligible for a McKay Scholarship to attend a school that can serve them better. Previously, a student was only eligible if they had an IEP in place. There are a significant number of students on a 504 plan in Florida that had been left out. I am excited by this because it will open up more opportunities for more students in our state.
Today was a big day for us. Today was the Autism one mile fun run and 5K with the proceeds benefitting CARD at FSU. CARD provides support and services to people with autism and their families, and we have already had the pleasure of going to them. Once this run was on the calendar, I circled it for myself (the 5k) and then Kaitlyn wanted to run her first “marathon,” so we did the one mile run together. We caught up with our friends the Spragues at the event, and met some nice new people as well.
The one mile run kicked off at 8:30, and I was just hoping that Kaitlyn would finish in time for me to relax for a minute before the 5k. Kaitlyn exceeded my expectations by a long shot, and she finished just ahead of me in 9:36! Her first race, and not only does she run the entire time, she beats her daddy to the finish line. I have never been more proud or excited to finish behind anybody in anything. The entire time we ran, Kaitlyn had a smile plastered on her face from ear-to-ear, and that just made my day.
Once everybody finished the mile race, it was time for the 5k, and I exceeded my expectations for what I was hoping for, setting a personal record in the process. I guess Amber and Kaitlyn, along with most of the Spragues, did not think I would be finishing as quickly as I did, because they were happily playing in the bounce house when I crossed the finish line. No worries though, Kaitlyn was enjoying herself and playing with some new friends. After the event we all went to Steak and Shake for all you can eat pancakes (9 kids, 7 adults).
The turnout at the event was heart-warming as well. The level of participation was high, even for Tallahassee. I will say this about the running community here, if it appears on the Gulf Winds calendar, there will be people showing up. I am proud to be a part of the running community in Tallahassee. To see that many people run in support of autism awareness speaks to the character of the people in the community, and I hope this event continues to grow each year.
Please check out the following blogs for a recap of their day at the event:
And check out the FSU CARD website at www.autism.fsu.edu.