Keaton

Okay. So I have been meaning to post about this for awhile now, but I just haven't been able to decide how to frame the information. I have wrestled with sharing this for a number of reasons: I don't want Keaton to be labeled; I don't want pity; and I don't want our family to be looked at any differently.

However.

I also don't want any perception that I am trying to hide anything, and I think certain tendencies/stories will make more sense if everyone has the whole story on our charming little imp. Heck, maybe it will even help someone feel better about their own situation. I know it has helped me to read about people who face some of the same challenges we do. So...

We are pretty sure that Keaton has Asperger's Syndrome. For those of you who aren't familiar with it, it is a developmental disorder that is most easily described (by me anyway) as "mild autism". He was evaluated a year ago and given a PDD-NOS diagnosis, which basically means, "something is off but we aren't sure what it is."

After another year, we are pretty sure that the "something" is Asperger's. We are waiting on another formal diagnosis to confirm all of this, but have been told by several speech therapists and others who work with special needs kids that they would be stunned if it was something else.

I have known something was wrong since Keaton was about 2. I had a lot of people tell me I was just comparing a first-born daughter to a second-born son, but I knew better than that. This means that none of this is a shock to me, and in retrospect, I feel like I was prepared throughout my life in a few different ways to recognize the little "quirks" for what they really were.

Developmental delays are different for every child, but I will tell you what Asperger's means for Keaton.

Keaton was slow to talk. He caught up fairly well, but still struggles with syntax. He explains things in odd ways. He can't use "he" and "she" correctly in sentences, but he will tell you, "girls are called 'she' and boys are called 'he'". He has asked me a "why?" question exactly twice in his life, and both happened in a 48 hour period a few weeks ago. He never pointed at things as a toddler. He has poor eye contact. He will avoid looking at your eyes if at all possible, especially when he is being disciplined or corrected. Lately, he has started averting his eyes whenever he feels shy too.

He takes things very literally, and misses a lot of social cues. He loves other children, but usually can't play with them longer than about 5 minutes before they separate away from him or he from them. Rylan and Branik are the exceptions to that rule. He cannot sit still for a library story time and has a hard time in preschool and church when he is expected to stay in one place and listen to what someone else is saying. He blurts things out, and cannot control his impulses in group settings.

Sometimes a certain song or TV show that he has been exposed to numerous times with no problems will suddenly become upsetting to him. Like "run out of the room screaming with hands clapped over ears" upsetting. Sometimes an unexpected change ("I forgot, we need to get gas before we go to speech") is more than he can handle -- he thrives on routine.

Probably the most noticeable thing about Keaton is his obsession with random objects. They change from time to time, but have included volcanoes, tornadoes, swordfish (seriously), meteors, school buses, Harold the Helicopter, and Toby the Tram engine. If you have been reading my blog for awhile, I am sure you have noticed me mentioning these things with some regularity.

He loves the number 7 and the letter "Y". When a show comes on TV with the rating of "Y7" he goes ballistic with excitement. He sometimes freaks out in the car if I try to listen to any track on any CD other than numbers 7 and 17. He can keep a running total of how many school buses we have passed over a 4 hour period of errands/appointments.

A lot of people with Asperger's Syndrome do not like physical contact, but I feel really, really lucky that Keaton is so affectionate. He doesn't have the sleep issues that many children with Asperger's have. He isn't picky about textures and has escaped the intestinal problems that many people deal with. He does still suck his thumb when he is tired or upset, and puts his hands in his mouth when he is trying to learn something, so I do think there is a bit of an oral fixation, but it's relatively mild.

The flip side of all these challenges and quirks? Keaton is brilliant in many ways. He will refer to me as "He" most of the time, but he can read. He has been able to write his alphabet legibly since he was barely 3. He writes out full sentences without asking for help. He can count over 100 objects, but usually stops at 77, because what's better than two sevens together? He can name all the planets in their correct order. He has serious artistic abilities, and I have the walls to prove it.

He remembers things -- tiny details -- like nobody else. For example, a few weeks ago, I found a row of books in a straight line extending from our front door through the living room -- probably a good 20 feet of open books. I thought maybe it was a track for trains or something he was planning to walk on. What I discovered (through watching him do it again later) was that Keaton had stood in front of our bookcase, pulled about 17 books off the shelf, and opened them to a specific page before lining them up. The common link? Each page had a baked good on it. A pie, a cake, a plate of cookies, a muffin. He knew from memory which ones would suit his needs, and these from among over 200 books.

So what does this mean for Keaton long term? Nobody knows for sure. He is up for some challenges, especially as he tries to learn how to behave appropriately with his peers. But I have a lot of hope that he will eventually learn how to cope with the things that trigger his erratic behavior. My biggest hope is that Keaton will be happy in his life, whatever that means for him.

There are days when I think I can barely hang on through one more meltdown in a store, especially with all the looks I get from strangers who just think my kid is a brat. There are days I think I'll lose it if I have to listen to Track 7 one more time. There are days I just hide out at home because I don't want to chase him when he gets away from me or have to explain to the cashier that he DESPERATELY needs for her to acknowledge that "Keaton saw 5 buses!" on the way to the store.

But there are also days when he is so in tune that it takes my breath away. There are days he looks right at me and says, "Mommy, I was the pledge leader today! And everyone likes me!" There are days when he interacts with other children in such a "normal" way that Boone and I point it out to each other. Those are the days I live for.

And through all of this, Keaton manages to charm almost everyone he meets. He has a smile to melt any heart, and dimples to die for. His quirks are such a part of him that I can hardly imagine him without them, and honestly, losing some of them would make me sad. And let's face it -- Keaton's antics provide most of my material for this blog. The kid can be freaking hilarious and is teaching me to look at a lot of things differently.

I want to end this on a positive note and share one of Keaton's latest interests with you. A few weeks ago, Keaton grabbed our camera and started taking pictures. I hovered over him at first, but it became quickly apparent that he was going to be very careful and that he was really fascinated. He wandered around the house for over an hour until he filled the memory stick up, and then put the camera back where he found it.

Later on, I loaded the card into the laptop and got a great look into the things that are important to Keaton. I deleted quite a few (there were hundreds over 3 or 4 "sessions") but thought it would be interesting for others to see what he captured:


Lots of Toby. And why does he love Toby so much? Because Toby ends in "y" and is the number 7 engine. Duh.

An ordinary toy ice cream cone? Nope. It's a volcano to Keaton. He slept with this for a few weeks. You may also remember that he had a volcano cake for his 4th birthday, and then dressed up as a volcano for Halloween that year.

This is how he prefers to look at it. I had probably 25 shots like this.

This is classic. Can you tell what it says? "Volcano exbrt" = Volcano expert. I found this one night after he was in bed. He didn't ask me about any of it, just declared himself so.




A swordfish. By itself and then on his leg. Because who DOESN'T want to be as close to a swordfish as they can, right?


I have no idea why this was fascinating, but again, several battery shots.


I think here Keaton was just trying to get the dumptruck in the shot, but when he saw his foot, he got a new idea: self portraits!


First the feet...

...then the face. First attempt...

...then the second...


...and finally, SUCCESS! The face shots ended with this one. He must have been satisfied.

Then he moved on to other people. He got Branik many times because they are home a lot together. He made sure to get one of Grandma while she was taking one of him.

He has some of every family member, but I am having trouble uploading more photos, so I'll have to get the extreme close ups of Boone's nose another time:)

So he loves all these things, but the thing most frequently photographed is his blanket. Up close, draped over furniture, thrown casually on the floor -- he has every possible angle of that blanket well documented.






So clearly I took the last one, but how did he end up in that postition? I love how chilled out he is, laying on top of the toy food drawers, feet in the blinds, sucking his thumb while hanging upside down. Whatever.

So that's that. Hopefully that explained a little of what is going on with Keaton to those of you who didn't already know. We love him to pieces and are working hard to get him the help he needs in the areas he struggles with. It isn't easy, but he's worth the work!

P.S. Feel free to ask us any questions if you have them. I just wasn't sure how much info to include here but I will talk about anything. Really, I will.