Don't forget him

Hard as it may be for people to believe- I can barely believe it- there are time when I don't know exactly what to do or say and that I have a hard time being grown up and mature (when your laughter stops, please read on).
A few evenings ago we were out to dinner with Dakota, some family members and friends. Among the group were two children besides Dakota, a boy and girl- both about his age. The seating got shifted around so it turned out the other boy and girl were sitting next to each other and Dakota was across from them. For 95% of the dinner they didn't talk to him or include him in their conversation. The time he was included was because I started a conversation with Dakota and they wanted to get in on it. I watched his face as they talked and excluded him and it was so sad; but the worst was yet to come. The little girl went to the bathroom and Dakota took the opportunity to talk directly to the boy and ask him questions- without much response. He kept trying as best he could but when the girl was on her way back to the table he said "oh, she's back, never mind", and went back to saying nothing. This broke my heart. He seemed to understand quite clearly that they didn't want him in their conversation and he assumed his place in the back of the bus.
I am ashamed to tell you that my feelings vacillated between anger and the petty desire to make them feel bad for hurting my child. I had to keep reminding myself that they were children and I had to help them understand and behave differently; not necessarily just because Dakota has special needs but because they should treat everyone with kindness and practice inclusivity.
The next day I asked him if it bothered him when this happens. He said it didn't and that he just listens and waits for a chance to talk (and all this time I thought he was impatient). I didn't ask him what about if he never gets a chance, but I did ask him if he understood what they were talking about. This made him angry - as though what I was suggesting was that he is stupid. I wish he could/would talk to me more about what he feels...of course there's always the chance that I couldn't handle it as well as he does.

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!

Who Dat?

My day has been chock full. Dakota and I are on our own for the weekend with lots to do: some volunteer work in the morning, a birthday party at noon at the nosiest place on earth (feel free to use that in your next ad campaign if you happen to be reading this- truth in advertising is incredible), a movie at 5:00 and several stops and errands in between. We were doing more blowing and going than the snow machines at the olympics. But just because I was on my own doesn't mean I was A-LONE. I spent my day, in turns, with Catwoman, the Penguin, Batman, Joan Jett, a dinosaur and a vampire- and that was before lunch. There were brief moments in between when the real Dakota showed up but they were few; mostly it was a cast of thousands. And he moves back and forth between characters without telling you so without a program you are never sure who you are talking to, though he will let you know when you get it wrong.
The boy absolutely loves pretend; and when he's really into it he doesn't like people laughing because that means they don't believe it's real. He likes it to be as authentic as possible. There have been many times after seeing something on TV that he will come up to to me and say "Mom I have tape, paper, scissors and this yarn- can you make me a helicopter that can really fly?" When you try to tell him that won't work he always says "Can we just try?". Don't you hate it when you have to learn lessons from kids. Once he insisted I could cut out the heels of some tennis shoes, tape some Slinkies to the bottom and then he could bounce like Spiderman. You have to give him points for imagination.  He was very upset when I laughed but did manage to take it quite well when it didn't work (he is not spoiled or indulged in any way). All in all though it was a lot simpler than the time he folded his leg before putting on his pants so it would look like he only had one leg. Then he informed my I could tape and staple a stick to his knee and give him a crutch so he could be a pirate from the movies. He saw nothing difficult or painful about the idea of shooting staples into his body- he will gladly suffer for his art. Before you call the authorities let me assure you we stopped short of the stapling.
Dakota has the most vivid imagination I have seen outside of Hollywood movies. Sometimes it seems he has too much imagination, or perhaps it is just too frequently exercised. He spends a great deal of his waking time "pretending". But he is very good at imitating what he sees- whether from movies or real people. I must admit that occasionally it worries me that as he grows older he will lose track of what is real and what isn't. When I think about it, maybe what really worries me is that he will think that life is like what he sees on TV and he will be very disappointed when it isn't...or maybe that's not him at all. Oh well, back to therapy!
So, maybe I shouldn't make a problem where there isn't one yet. As long as it doesn't interfere at school or other places where he needs to focus and follow the rules, he can load up with all the extra people he wants. But next time we are not taking them all to the movies.

Silence is golden...and just as rare

Have you ever heard the expression 'running the gamut' meaning from one extreme to the other? Let me illustrate:
Last Friday we took Dakota to his first "grown up" concert. We went to see Joan Jett because as Dakota told us MANY times during the show, he "loves rock n' roll". We had to drive for two hours to get to the concert which is almost in Kansas; in fact with a good tail wind you could spit across the border (judging by the crowd I believe many of the concert goers count this among their list of pass times). Dakota was a golden child for this trip; he watched a movie and uttered only five words the whole way. He was enthralled by the show, waving his arms and singing out "ch, ch, ch, ch cherry bomb" right along with the rest of the audience. I am happy to say that's the only behavior he mimicked from the so called adults around us. Sometimes Dakota's immature development and distractibility are a good thing- especially when it keeps me from explaining what the people behind us were doing, which I am still not sure is even legal let alone physically possible.
The trip back was just as smooth- Dakota finished his movie, was totally silent and fell asleep about 30 minutes from home. Contrast this with the 20 minute drive to grandma's house today...
If the child took a breath from the time the car door shut until we arrived at grandma's house and I ran screaming from the vehicle, I missed it. It could only have been during the brief time when I tried to stuff my head in the glove box or it was drowned out by the sound of the electric window going up and down on my throat.
It started innocently enough with Dakota saying "Mom can I tell you the funniest thing ever?"- thus began the record breaking longest run-on sentence in the history of history or sentences. The only thing more fascinating than watching 17 back to back episodes of a silent cartoon is having a child describe the details of every failed attempt by the coyote to catch the 'hun-runner' (as Dakota calls it). He must tell you every one of them because it is not the same story line every time with a new Acme product so don't try to tell him you know what happens. His story/stories were occasionally punctuated with a repeat of "Can I tell you the funniest thing ever" until I finally told him he could only say one more because he had already told me the funniest thing ever four times; to which he replied, without hesitation, that he had only told me three times. All of a sudden the kid can count with lightening speed and track a conversation with pinpoint accuracy.
Don't get me wrong, this is wonderful progress for Dakota. Being able to watch a show and then relate back to you not only what he saw but the story and it's progression is a great advance. It is very much like a "normal" 7 or 8 year olds stories. And as soon as my eye stops twitching and the doctor releases me, I'm going to be thrilled.