In general, people with Asperger’s are not known for their ability to understand social boundaries. The idea of “personal space” is not one they tend to embrace. They will, however, develop deep, intense friendships and relationships. They also tend to become hyperfocused on a particular subject, to the point where it will consume pretty much everything they do and say.
Shonda Schilling shares some of these examples toward the end of her book about her son Grant. One of my favorite parts in The Best Kind of Different is Shonda’s first time speaking in public about Grant’s diagnosis. She gave a very emotional speech (I can only imagine the guts it took for her to open up the way she did in a public setting) about the struggles she had with him for so long before his diagnosis, and how life had changed since the diagnosis. Her husband Curt was up next, and offered a top ten list (one that Amber and I can relate to pretty much every one of the items), The Top Ten Things You Learn or Experience With an Asperger’s Child (pages 166-67):
10. It’s humanly possible to say “stop” four hundred times in a ten-second time frame. (check)
9. You know the exact time you will be exhausted every day: within fifteen seconds of waking up your child with Asperger’s. (check, sometimes)
8. At fifteen your Asperger’s child will likely have an IQ twice as high as yours and let you know when and how you were wrong every day. (can’t wait)
7. Everyone at the grocery store, swimming pool, or other public gathering place knows your child’s name, even if you didn’t tell anyone. (check)
6. Be prepared to never have the last word in any conversation ever. (check and double check since Kaitlyn is a female and I stand no chance).
5. Pray that if they have any nervous tics or habits, they don’t include picking their nose.
4. Be prepared to be presented with more information than any human has the right to know about Legos, Star Wars, bulldogs, Bakugan, Pokemon, dinosaurs, Yu-Gi-Oh!, World of Warcraft, Webkinz, the human skin, bowel movements, and body hair–and hope your child only picks one. (check…pretty much any show on Disney Jr or Nickeldeon)
3. Do not fart in public if you don’t want everyone within earshot to know who, where, and what just happened. (check, and she announces it loudly)
2. Get ready for serious doses of unconditional love. The heart of an Asperger’s child is not bound by society’s norms, not limited to lessons we were told or taugh, not confused or embarrassed by anything the heart emits. Theirs is a brand of unconditional love we should all pray at night to be exposed to, or to be able to extend ourselves. (check, and proudly so!)
1. Be prepared to go further than you dreamed, work harder than you thought possible, to love, and to cry, but at the end of the day wrap your arms around a true gift from God. (check a million times over)
I love Curt’s list, and laugh out loud each time I read it. These are all things that we have or will experience, and sometimes at the end of the day, we are just plain exhausted. The best part about the list is that he probably could have added at least 10 more items.
“The times when he (Grant) would say a word or phrase that would show a level of understanding and complexity that exceeded what I myself thought…In those moments, I was always caught speechless, trying to understand how the same child who just uttered those words could have a meltdown in the grocery store over pork chops two nights before.” The Best Kind of Different (pg. 59)
As I read and re-read those words countless times, all I could do was laugh to myself. Shonda’s description of Grant is what Amber and I seem to feel and experience several times a day. I bet if I were to ask the parents of any Aspie, a vast majority would say the same thing. And that is part of what makes Asperger’s so frustrating for parents/caregivers/families. Here they are making a point on something that far exceeds anything that we have thought, yet something so small can trigger an epic meltdown.
Just this morning, as I was walking in the door after my run, Amber gave me a perfect example of this. Apparently while I was gone, Kaitlyn decided to count to five…in Italian! Nobody here speaks Italian, and to my knowledge she is not studying the language at camp, but she can sure count to five. Like so many things she says to blow our minds, I think she picked it up off of a show she watches…but it probably was not the same episode of the same show she was watching this morning. She can also count to three in Chinese. On the flip side, bring up the fact that she did not see Daisy at Epcot in March, and the tears will flow for quite some time, and she will be upset beyond consolation.
Days like Shonda described are frequent for us, and the roller-coaster of emotions can be exhausting at times. That Kaitlyn can go from being so sweet to having a major meltdown to being sweet again in the course of a few minutes is draining.
This week, I decided to re-read one of my favorite books. I read it for the first time about 6 months ago, right about the time we were starting the process of getting Kaitlyn evaluated and eventually diagnosed with Asperger’s. It was a coincidence that this book was released at about the same time, and I only found out about it from an article on redsox.com. It is Shonda Schilling’s book The Best Kind of Different: Our Family’s Journey with Asperger’s Syndrome. I will admit that I really only wanted to read it at first because Shonda is the wife of former Red Sox pitcher Curt Schilling, and I was looking forward to seeing the human side of someone that excelled on the baseball field.
I was not disappointed one bit. As I was reading the book, I thought for a minute that maybe Shonda was describing Kaitlyn when she talked about some of the things her son Grant would do. We were living some of the same experiences, but yet at the same time, the experiences were vastly different. Little did I know at the time that that feeling was exactly what the spectrum of autism disorders meant.
As I make my way through this book a second time, I am going to share some exerpts that either make me laugh, or maybe elicit an emotional response. My hope is that maybe you will pick up the book and join me. You will not be sorry.
Curt Schilling wrote the introduction, and right off the bat, he wrote something about Grant that made me laugh:
“But the degree to which Grant marched to his own drummer seemed very unusual. Most remarkably, the depth of emotion Grant felt and expressed went far beyond what I’d witnessed in many adults. Sometimes I was proud that a kid could love so deeply so young. Other times I was insanely upset that a kid could be standing in front of me, looking in my general direction, hear a specific set of orders, turn around, and not act on a single on of those oders.” (Pg. 2)
I had to laugh because I have felt the same way at times with Kaitlyn, and still do. It drives me crazy.
As I come across more in the book that really hits home, I will share it. I would really like for someone, anyone, to join me and share things from this book that they appreciated and maybe have seen in Kaitlyn or their own child/niece/nephew.
Recently, I have broken from my normal reading selections and branched out. Sure, I will have my go-to books like Dustin Pedroia’s “Born To Play,” or even Ryan Sprague’s “Grateful,” which by the way is a nice invite into the FSU football program. I’ve even read my share of running books, including both of John Parker’s novels, “Once a Runner” and “Again to Carthage.”
More and more, however, I find myself lost in inspirational books. I thourougly enjoyed Michael J. Fox’s book, and the combined effort of Lee and Bob Woodruff on “In an Instant” gave me new appreciaton for a loyal and loving spouse (of which I have one!).
But the best book I have read recently is Shonda Schilling’s “The Best Kind of Different” (sorry Ryan). I originally picked up Shonda’s book because she is married to former Sox pitcher Curt Schilling, and I am glad I did. As I was reading the book about their son Grant, and the challenges they faced before they knew what was causing him to be the way he is, I found myself thinking they were talking about Kaitlyn. A lot of what the Schillings faced were what we saw with Kaitlyn. Once the Schillings found out that Grant acted the way he did because he has Asperger’s, they developed strategies to make his life even better; when we received Kaitlyn’s diagnosis, I immediately began recalling some of what they had put into place for Grant. I think Shonda put it best in the book, “when you have met one person with asperger’s, you have met one person with asperger’s.” It is so true. While some people hear asperger’s or autism and lump everyone together as one diagnosis, it is important to remember that each case is different. In the few weeks since Kaitlyn’s diagnosis, Amber and I have had to continually educate our friends and family about asperger’s and autism.
Whether or not you are exposed to asperger’s or autism on a daily basis, I would encourage you to pick up Shonda’s book. If nothing else, you just might learn something.