The Dakota Dictionary

  I'm sure that most people are like me in that sometimes when you can't think of exactly the word you're looking for you try to come up with something that seems close. It may not even be a real word but it makes sense to you. I've been known to do this even without the influence of alcohol or sleep depravation. I like to think of it as my way of clearing up the English language- much like getting rid of all the needless letters. I mean what is the point of silent letters? Is it some sort of elitist plot to make the rest of us feel ignorant?
But in my case I knew I made up the word. I knew it was probably not right I just couldn't remember what was right... you have to give me points for creativity. Dakota has his own dictionary and I think his words fall into three categories. There is the category he uses so that something makes sense to him and he should get a lot of points for finding ways to adapt, not to mention they do cut to the chase so you don't have to guess what something means. One example I've mentioned before: he can't say electricity but he knows what it does so he calls it "lightricity". It gets to the point- it does turn on the lights. Of course he has his "case" shoes with him- "case somethin' happens to my nuther ones".
  Then there's the category that all kids have and grow out of generally like saying 'masketti' instead of spaghetti or aluminuminum...or nuculer!
  But there is the third category that I find intriguing. Words that rhyme and are said together are difficult for him: Hontanna Matanna= Hannah Montana. He loves music and singing but for some reason- whether its the rhyming or too much to remember, I don't know- he cannot do it. He sings a line and the rest is completely messed up or he just sings la-la instead. I cannot tell you how many times we have practiced 'Jingle Bells' over the years but he still barely gets it. *Note* This is the most dreaded and feared song in all of history at my house; even six choruses of "Feelings" falls to second now!  And it is not just the difference between easy and difficult words. For example, instead of "toenails" he hears and says "tornadoes"; however, he can say "venomous" with absolutely no problem. Interesting isn't it?  I wish I could unlock this mystery. For some reason I think if we could figure this out we would have the key to how his mind processes and could teach him so much more effectively. Time to put on my Sherlock hat and cape (don't think I don't have them either- Dakota comes by his theatrics naturally) and figure it out.

I'm sure you'll be relieved to know that we are all feeling better at my house. Unless of course Dakota gives the cold that I gave to him back to me, then I give it back and on and on....the gift that keeps on giving. Could be worse though; he could decide to start on the 'Knock Knock' jokes while I'm stuck in bed. How long do you think I'll sleep if I make a cocktail of decongestant, anti-histamine and chicken broth?
We're going out of town this week and Dakota will be staying with grandma for a couple of days and then with a friend for one night. This is the first time we have gone away for more than one night without Dakota. I must admit I have reservations about it- outside of the usual worrying about him while we are gone. There is the issue of change. Children with ASE, FAS or several other disorders in general -and Dakota specifically- have trouble with change. To be more precise, they have difficulty transitioning from one activity, person or situation to another. He becomes unsure how to act because he cannot change gears that quickly. I don't think he is scared or worried. I believe he knows we will be back. He is just unsure of himself. This leads to the second issue- his behavior.
Dakota is unpredictable even under good conditions. This is true even for us; we don't always know how he will react or why. It makes it that much more difficult for us to ask people to stay with him. Dakota is used to grandma and she has seen about all of his moods so that is not really an issue (also I threaten him with everything in my arsenal if he is disrespectful to her), but staying with our friends is another story- although our friends are going to keep him at our house so they can maintain some familiar surroundings for him. I have no idea what his reactions or moods are going to be so I am worried about how everyone will get along. Our friends are great people and I know they will take excellent care of him- but will THEY ever be the same! It is a sad fact that I still worry about what people think of him (even good friends like them) or perhaps what people think of us as parents. But I also wonder what might be going through his mind and emotions. Does he need us as anchors to know how to act or to use us as his gauge for whether his responses are appropriate or not?  Come to think of it, I could use someone like that.

Be vewy vewy quiet

It has finally happened. I feel about as bad as I did some years ago when I went to a funeral and ate some bad chicken salad; grief and food poisoning at the same time- what a memorable day. At least the next two days were quiet. Total silence; punctuated only by frequent whooshing noises. But at least there was quiet. Right now there is not as much. There is a lot of Dakota asking "How come you're sick" or "Can I eat your throat lozenges" or "Want me to keep you company and teach you how to make art out of apple cores"?
When I was a kid I didn't like quiet; in fact I didn't really start to enjoy or look forward to silence until I was in my 30's. Dakota does not like the quiet either. The other day he was sent to his room for some reason. He couldn't listen to music or movies. He had to stay up there and play with toys or do whatever else until bedtime. After about an hour he came downstairs crying. He said "Can I come down? I don't like it up there; I don't understand the quiet." It seemed to me a very interesting way to put it. I wonder if it scares him; or if he doesn't know what to do with it; or if it makes him lonely; or if he just doesn't know how else to describe it. Or if perhaps that is exactly what he means. Dakota generally has a great imagination for pretend but that usually involves others or an audience of people. The quiet time that we often spend just thinking or letting our mind wander may be more than he can process. Maybe his mind doesn't wander - it's just blank and that scares him. I have no way of knowing because he can't explain it to me.
I try to think back to when I was young and didn't like the quiet and why. For me it seemed scary- like the nothing. Perhaps because I had been raised with so many brothers and sisters there was always noise and that seemed normal to me; or maybe I was just afraid to be alone. It could be it reminds Dakota of being an infant when no one was there and it scares him; or maybe its just too big and unstructured for him and that confuses him. I hope we can teach him how to enjoy the quiet because I think it will help him develop thinking skills. And I hold out hope he will enjoy it so much that he'll give me some!

It's written all over your face

Have any of you reached the stage in your life either because of your innate maturity or accumulation of years (mine would be the former-and I say that with a straight face) that you reflect more on your life and motivations?  I guess it is inevitable that at some point we grow up and begin to think about what we feel and why we do things. At his trial for heresy, Socrates said that the unexamined life was not worth living- of course that was in Greek and I don't speak Greek so for all I know he may have said 'an unspiced Gyro is not worth eating'... boy would that make life easier.
Life was much simpler when I could just cruise along and not have to review my motive for everything I did; didn't have to check my emotions when I spoke to decide if there was a good reason for the rising anger in my voice; or realize that at every moment, with every sentence, someone was watching or listening. Everyone with children or who is around children realizes that they pick up on everything you say and how you say it. You can't get away with "Do as I say, not as I do". Dakota is very literal and, like most kids with developmental disorders, subtleties are lost on him. He will read exactly what he hears in your voice or sees you do.  This means that he will see your real motivations whether you like it or not. So when I see him being impatient with people if they ask him to repeat something because they didn't hear or understand him, I have to ask myself if he gets that from watching me or if it's part of his disabilities. When he has a hard day at school we have to pry the story out of him so we can try to communicate to him what he could do differently and that perhaps he interpreted a situation incorrectly. And that's just hard days at school; we also have to go through the same kind of thing everyday because of his frustration with himself over something he can't do- like button his shirt or tie his shoe; or his inability to follow lengthy or in depth conversations (by that I only mean a conversation that is more than one or two sentences or moves from one concept to another). All of these situations produce a reaction that we have to determine the appropriateness of; where the response behavior came from; how to show him a better way of handling things. The older he gets the more I worry that his responses are becoming more ingrained in him and re-teaching or getting rid of the responses may not be an option pretty soon.
Which of course leads me to worry even more about every thing I say and do. Nobody knows how far Dakota will advance. Only very recently have I considered and voiced that he may never be able to live any more independently than a group home. I have always tried to put off thinking about it or deluded myself that he would outgrow all of this. I should feel fortunate I suppose; I know many parents whose children will never be as well off as Dakota is. I feel like he will reach a plateau and I am running out of time to teach him to be patient with himself and others so he will be happy and have friends; to be determined and stick with something but not be unrealistic about what he can do; to not be discouraged when he can't do something; to not let anger and indignation take over when someone insults or slights him, and on and on.
Dakota has so many other things working against him I need to give him all the tools I can so he can function in society. Which means I have to look at each of his reactions and find out if there's a part of me in it; and if there is, how do I change it- in both of us? I thought life began at 50... this is living? I feel more like this must be what hell is: an endless Dr. Phil show forcing me to look at my feelings- aaagghh!