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.

Neat Little Packages

From Guest Contributer - gouldie64:

I am a big fan of categorizing things. I create folders for my emails. I love to sort Legos (which, by the way, should be sorted by shape, not color). I am a big fan of tagging photos. For years I wanted a category for Dakota. I wanted to find a term that could neatly define him and explain his behavior and abilities to others.

When it comes to Dakota, however, attempts at categorization or labeling have not only failed, but have failed miserably and painfully. Recently Dakota's other parent (the regular contributor to this blog) suggested that we take Dakota in for an evaluation regarding his auditory processing disorder. My initial reaction to this was that I don't need an evaluation to tell me whether or not he has an auditory processing disorder. I know he has one. Just like I don't need my doctor to make that face when I step on the scale at her office. I know I weigh too much, so she can keep that little look all to herself.

My other reaction was to recall Dakota's other two "evaluations", both of which ended with parent(s) and child in tears.

Rhode Island - 2004: Dakota's first evaluation was a neurological evaluation which took place about a year after he came to live with us. There we sat, in a room with a physician and three residents, as evaluated every "anomaly" they could find with our child. Did you know that there is a medical term for "unibrow"? It's called Synophrys. We heard all sorts of terms that day: Synophrys, microcephaly, incurved distal metacarpal, pointed helix, and hirsutism. All of that those terms to say that Dakota has a unibrow and a small head; that his pinky fingers and toes point inward; he has a pointy ear; and he's a hairy little guy.

It's very discouraging to spend three hours watching and listening as a team of medical professionals catalog everything that's "wrong" with your child. The discouragement quickly turns to rage, whoever, when those cheeky little residents start to make bets on the root cause of these various abnormalities: ("I bet it's Fragile X Syndrome." "No way, dude. We're looking at a trisomy.") I don't know how much Dakota understood of what was being said about him that day. I distinctly remember, however, the meltdown that came later that night. In the end, his evaluation gave us nothing but fancy medical terms for a whole bunch of physical characteristics which may or may not be related to or caused by a genetic condition. That was helpful.

The second evaluation was an evaluation for Fetal Alcohol Syndrome (or Affect or whatever) and while there was only one physician instead of a team of physicians, the end result was pretty much the same. Perhaps this evaluation would have gone better had the physician not suffered from OCD. He repeated every procedure at least five times. One procedure, for example, was to compare the philtrum (that little dip between your nose and upper lip) to photos of philtrums, each of which had a numerical score. A smooth philtrum is a feature of FAS and establishing a quantitative description of the philtrum is one step in evaluating a person for FAS. Five times, FIVE TIMES, he held the photos up to Dakota's nose. Each time I said to myself, "It's a four. It's a four. It's a four. It's a four". Finally, after the fifth attempt, he wrote down a four. It was pretty much the same when he measured the space between Dakota's eyes, the width of his eyes, and the circumference of his head. For each he measured at least five times.

Then, for some reason he had to make some sort of evaluation of Dakota's testicles and this evaluation involved a little squeeze. On the first squeeze Dakota looks at me, his eyes widen, and he giggles. Yeah - that's not gonna last until squeeze number five is it? Squeeze number two and Dakota begins to look concerned. The doc goes in for squeeze three and Dakota starts to cry. I somehow restrain myself from throwing the doctor across the room. Instead I pulled away his hand and exclaimed, "You're hurting him!". He explained that he needed to finish his evaluation and I explained that we were very, very much done and he could leave while I dressed Dakota.

In the end neither evaluation gave us helpful information. You can Google Dakota's symptoms and you will come up with something called "Cornelia De Lange Syndrome". Big Whoop. That gives us a label, a neat little box in which we can file these seemingly random and unrelated physical features. We can tag photos of him on Flickr with "CorneliaDeLange" and his photos will be chunked with photos of other kids who look surprisingly like him. There is no known root cause for Cornelia De Lange syndrome. Children get included in this exclusive little club if they look the part, and Dakota looks the part.

I'm pretty much done with these evaluations. I no longer feel the need for categorization. Dakota is much more than a collection of physical anomalies, and cognitive disorders. He's my son, and that's the only label I need for him to have.

Discipline is a four letter word

One of the hardest things about parenting is disciplining, especially with consistency. These two words might as well be in a foreign language for me. I am only disciplined until the cookies come out of the oven or the alarm clock rings so I can "get up early and exercise". At least I'm consistent in my sloth.
Recently Dakota has required some extra disciplining for trouble at school. I've mentioned his quick to anger response before and I still don't know if this is a defense mechanism, if its just the easiest one for him to show or access, if its one he understands so he uses it (can't imagine where he might get that), or if his impulse control is so underdeveloped that he can't figure out how to stop it. We try to teach him other ways to handle situations he doesn't like so perhaps he won't reach the boiling over point. We talk about moving away from a kid who he is bothering him- though at times "bothering" is a stretch. Here's a conversation: Me: You got in trouble for pushing Johnny. Why did you do that? Dakota: He was bothering me. Me: What did he do? Dakota: He was looking at me. Me: What else? Dakota: Nothing. What's next I ask you- he was breathing too often?
We try to teach him other ways as well: ask the teacher to let you go to the bathroom or the other side of the room for a minute; try to squeeze your hands really tight and squeeze out all the anger before you do anything; try to sing to yourself so you won't pay any attention to them. I don't know if he really tries these things or just says he does. Of course sometimes, they just don't work and you say and/or do something you shouldn't (not that I speak from experience).
Disciplining turns out to be more difficult for me with Dakota for several reasons- and I am still researching whether or not all of these are common problems for children with Dakota's ASD and developmental problems. First, even at 10 because he is only developed emotionally about as far as 5 or 6, you have to follow quickly after the infraction with the punishment or he has no idea what he is being disciplined for. He is much like a cat in that respect, he cannot connect two events that are separated by more than a small amount of time. He may remember parts of it when you remind him of an incident but not the whole thing and certainly not the gravity of it. Last week he got in trouble at school and we were all going to have to see the principal (my palms are sweating even now) so we could discuss the punishment he would receive at school- separate from what he received at home. But then the snow came and he has been out of school for several days. Now I'm dreading the return for the meeting. Certainly he has to be accountable and pay the consequences but I'm not sure it will mean anything. I don't know if he will make the connection 6 or 7 days after the incident.
Second, I'm beginning to wonder if "he was looking at me" carries a lot more significance than I thought. Is it possible that in his mind any attention given to him that he doesn't elicit is "bothering"him; that he views that as some kind of judgment or criticism every bit as hurtful as calling him stupid or making fun of him? When bigger kids do it, he usually withdraws from them and goes to play in a corner much like he does when kids are playing something he doesn't understand; but when they are kids his age or kids in his class or even a teacher, he lashes out. Maybe it's because he knows them and is not afraid- just hurt and angry.
Whatever the reason, we have decided to take make an appointment at the child studies center in hopes that they can help us teach him the skills he needs to explain to us what's going on and what he's feeling. Maybe we'll all learn some new ways to deal with anger and people who frustrate us (I have no specific people in mind for myself with that last thought).