I had to take some time to digest what I heard and read before deciding to share my feelings about it. The “it” that I am referring to is singer Susan Boyle’s recent announcement that she has been diagnosed with Asperger’s.
My initial reaction was that having another prominent person reveal the diagnosis will help continue to develop awareness of Asperger’s and autism. I hope that I am right.
But I had another reaction, one that was unexpected, when I read the story more. It wasn’t so much that Ms. Boyle revealed her diagnosis, it was a quote that was attributed to her.
“Now I have a clearer understanding of what’s wrong and I feel relieved and a bit more relaxed about myself.”
My issue is with Ms. Boyle referencing having something “wrong” with her. That is a patently false statement (though I doubt that was Ms. Boyle’s intent).
Being diagnosed with Asperger’s, or any type of autism, is not a signal that something is “wrong” with a person. I reject, and have done so continually on this blog, the notion that people like Ms. Boyle and like Kaitlyn have something wrong with them because they have Asperger’s.
Is it wrong for someone, and from here on out, I will be referring to Kaitlyn since I do not know Ms. Boyle, to be extremely bright, devoted, caring, and focused? I don’t think so. Does Kaitlyn sometimes drive Amber and I crazy with her obsessions (currently American Girls)? Yes, but we embrace each obsession and are fortunate that Kaitlyn even lets us in in the first place. Are there times where Kaitlyn amazes us with her compassion? Absolutely; like on Thanksgiving, when we went around the table and said what we were thankful for and she led with “shelter,” making the rest of us take a step back for a second and reassess what we are thankful for, all while realizing that it may not measure up to what a seven-year old came up with off the top of her head.
I have no doubt that Ms. Boyle has faced numerous challenges in her lifetime, and she will continue to do so. Her diagnosis will explain so much to her, and hopefully allow people to be more understanding of her. But I can assure you that there is nothing “wrong” with her.
I should have known that I was about to witness something that would surprise me, even though I should know better than to be surprised at pretty much anything that Kaitlyn does anymore. But there I was, walking away shaking my head, after what Amber showed me what Kaitlyn was doing the other night.
As long as she has had a successful day (good in school, respectful at home, etc.), Kaitlyn usually gets some time after her bath to play on the computer. Most days, she will be checking out games on the PBS site or the Disney Princess site, and will sometimes be planning our next cruise using the Disney Cruise site. The other night, however, she was not on any of those sites. No, she went a completely different route, and both Amber and I were shocked and proud.
Amber snuck out of our computer room to retrieve me from watching MLB Network to take a look at what Kaitlyn was doing. She wanted me to be really quiet so that Kaitlyn did not stop what she was doing and move on to something else. Easy enough, especially because I can move like a ninja if I have to.
When I snuck into the computer room, there was Kaitlyn, sitting on the computer, watching a video about the Civil War. When I asked her why she was watching something about the Civil War, she flatly stated that it was “because I want to learn about it.” Ok then. After that, I went back to watching TV, but I decided to try to listen to see if I could hear what Kaitlyn would be doing for the rest of her time on the computer (she tends to narrate what she is doing). Once the Civil War video was finished, she searched for one about the Revolutionary War, and she finished by watching one about the Statue of Liberty. The child has an endless thirst for knowledge.
Like everything else she takes an interest in, Amber and I fully expect that she will quickly become an fully immersed in learning about those subjects. It is just a matter of time before she starts quizzing us on different facts she has learned. I can’t wait.
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.
No matter how many times or how much we encourage her, Kaitlyn just cannot seem to believe in herself. She is very much a perfectionist, but the standard that she sets for herself with everything is so high that she is bound to miss her mark on occasion. Amber and I just cannot seem to get that across to her sometimes.
This morning, for example, Kaitlyn was working on a word search in her baseball puzzle book she bought a few weeks ago. When she would find a word that she did not know the meaning of, she would ask me what it meant. Of course, I was more than happy to provide the information to her. She told me that she wanted to “know everything about baseball,” so one can imagine how that made me feel.
A few minutes before I left for work, I figured it would be a good idea to do a quick review with Kaitlyn for her math test today. We reviewed for a little last night, but I wanted to be sure that Kaitlyn was ready. Today’s test is on double-digit addition and subtraction, and Kaitlyn was a little worried about it.
We went over the review sheet she brought home, and she did fine. She even gave me her own example (100 minus 40 being 60 because 10 minus 4 is 6), so I thought she was more than ready. When I told her that I knew would do great, she told me that she was worried she would not do well. She said that, “the answers are not all in my heart.” I told her all she has to do is take her time and make sure to answer every question, and she would do great.
Her comment about not having the answers in her heart was typical Kaitlyn. She believes that she should get a 100% on every test she takes, and while that is a great goal, Amber and I know that she may miss a question from time-to-time. As long as she gives maximum effort, we are happy, but Kaitlyn does her best to talk herself out of doing good every time; the sad part is that when she brings the tests home, she does the best on the ones she was most worried about.
Amber and I both know and understand that Kaitlyn will continually think that she is not good enough, or that she can do better. It is pressure that she puts on herself, and it is not necessary. It is a delicate balance for her when it comes to self-esteem, and we do the best we can every day to reinforce positives with her, without dwelling too long on anything negative.
I am confident that Kaitlyn will do great on her test today, no matter how hard she tries to talk herself out of it. If she does not meet her expectations, we will use today as an opportunity to do better next time.
When you are 6, almost anything qualifies as exciting news. Kaitlyn, however, sees very few things as worthy enough to qualify as being “exciting” news. So when the very first thing she just has to tell Amber after school, and the very first thing she has to tell me when I get home after work, qualifies as exciting, we know it is going to be good.
Since school started back in August, I have tried to provide updates on Kaitlyn’s progress in all subject areas. There is one area that I especially key on, probably because the raw numbers are right in front of me and I can dissect them nicely. That area, of course, is the Accelerated Reader program the school uses.
To give a quick overview, AR is a color-coded system of evaluating a student’s reading level. Like every student, Kaitlyn was given a baseline evaluation to determine what books in the library would be available for her to check out and be tested on for comprehension. Her baseline was 1.0-2.9, basically first grade and second grade. She was given particular point totals she was to achieve each nine weeks, and has consistently exceeded her goals by a lot. Not a real surprise to us because Kaitlyn really loves to read.
You might be able to guess where I am going with this, but I will share anyway. Yesterday, Kaitlyn was excited and proud to share with us that she was now allowed to read books that are coded in green. I knew that was a good thing, but I was not 100% sure on what that meant as far as grade-level goes. I checked out the chart on her AR folder, and I learned that green is for books that are rated 3.0-3.9, third grade reading level. She was given a goal for the last nine weeks of school of 6.5 total points, and she has already gotten 1 point thus far.
The books that are coded green will be somewhat more difficult than the books she had been reading, but I don’t think they will present too many issues for her. In fact, the first two books she brought home that are green that she will be tested on are ones she should have no problem with. One of them is on Carrie Underwood, and Kaitlyn read that one back in October or November, but was not allowed to take the test on it; the other one is part of the Rainbow Magic series that she already has a ton of (I don’t think she owns the particular book she brought home).
Amber and I very proud of where she is with her reading. We encourage her constantly to do her reading, and challenge her to sound out difficult words before she asks us to help her. And yes, it sometimes means that she will read more of the cruise guidebook to us, but we do not mind at all. Kaitlyn is bright, and she loves school, and she loves to learn, and Amber and I could not be happier about it.