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.

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).

A brief commercial interruption

Do you ever wish that television had never been invented? I mean sure without it we would never have heard the story of a man named Brady or shared the mystery that is Oprah, but we also could have completely escaped all idols and losers and never had to explain Viagra to six year olds.
There's a commercial on these days for an office supply chain that features a man looking at every single item and exclaiming "Wow, thats a low price!" Even during the commercial, which is only 30 seconds, after the third time I want to wrap the guy in the copier paper and staple him to a dry erase board.  So imagine my delight to find that this is Dakota's latest obsession. I can't count how many times a day he says this. There's no particular reason for it and I have no idea what triggers the memory for him. He just belts it out at odd times: around the house, in the car, at school. It's like the commercial equivalent of a little Clay Aiken breaking out into show tunes at the drop of a hat.
Like most things I'm sure he is looking for attention with it. He got noticed and people laughed the first time he did it so he just keeps doing it. It feels good to get noticed so why not. He completely misses the facial queues and other nuances that let the rest of us know when something is enough.
I know I have mentioned Dakota's propensity for repetition and I think that is part of it as well.  I think repetitive speech sometimes helps him calm himself and gives him a way to interact with the "normal" world. He imagines that people will know the reference because in his mind everyone sees the same t.v.  shows or movies or even the same people at the store or on the street, so he will fit in. I think at times he falls back on these things when a conversation gets to be more than he can follow. And if this helps him to soothe himself or get his focus back then good for him. Maybe I should just not let him watch t.v. and stick with music instead. I mean what annoying phrases or bad language could he possibly get from popular music!

Different does not mean bad

There comes a time in every life when we reach a crossroads between adult and child (though I haven't reached it yet -ask anyone). It is by turns exciting, scary and sad- sometimes all in one day. Frankly, the same can be said for a typical day in menopause. I haven't changed my mind: if I'm still in menopause when Dakota reaches puberty, one of us is not coming out alive!
The exciting part is understandable: You can do more things, you get more privileges. Now that Dakota is in the double digits (he recently turned 10) his favorite expression is "Mom, can I __(fill in the blank) since I'm 10 now and a grown- up?".  I know times are changing and kids are maturing faster apparently;  and it may also be true that the laws of physics have been suspended just for me and Dakota is aging faster than I am (it could happen!) but someone will have to explain to me when 10 became the age of adulthood.
The scary part is also understandable- probably more for the parent than the child- because the child is unsure how to act and what to say. I mean, is Spongebob Squarepants now for "babies" and you shouldn't even bring it up to a 10 year old?
The sad part is not obvious to a kid but it is to the parents. And more so I think for parents of kids with Dakota's developmental problems. It's of course sad that you don't have your little baby anymore who says cute things and wants to sit on your lap; now you have a 10 year old alien who rolls their eyes at you and assumes you have traded your brain for a bowl of jello salad. But its sad for other reasons. Because of his cognitive disabilities, and maybe even because of his difficulty reading social cues, Dakota has not really cared what other people thought about him. If he wanted to use a walking stick and walk around the mall hunched over pretending to be Yoda- he did it; and if he wanted to wrap a scarf on his head as hair and pretend he was his teacher taking his class on a field trip when we went to the grocery store- he did it. And we let him. He has a great imagination, he's very happy and isn't hurting anyone, and honestly most of the time it's fun. I think a lot of kids wish they could do it too.
But now he's beginning to change. The other day he had some "hair" on in the car. When we got to our destination he said he would leave it in the car so the other kids "won't laugh at me." Now instead of just being himself he has to worry about what other people think. We have never told him to worry about that but we have always told him that when he makes a choice to do things others don't do, people might laugh or tease so he needs to be prepared. He already has enough reasons for mean people to ridicule him so if he is going to do these things we have to help him learn to cope. Until now his response has always been "I don't care. I don't listen." Sadly kids are now making fun of the way he talks or his inability to play certain games and he is noticing it. He is now learning that he doesn't want to give them any more ammunition.
This is so wrong. How many years and dollars of therapy and self-help books have many/most of us spent to get to the place where we can say "I am going to be myself and you don't have to like it or approve of it." There's a song I love from 'A Star is Born' that says "...they believe that strange is a word for wrong; well not in my song." I hope we can find a way for him to remember that and balance fitting in with being Dakota. He is not bad or wrong; he hears a different drum. Actually, I think Dakota hears the whole percussion section.

And miles to go before...no, thats not going to happen

There are two things that strike fear into my heart to even contemplate: Running out of chocolate in the middle of a movie, and; being on a plane for 10-12 hours with Dakota (actually there is a third thing: what if Larry King is the first person to live forever and he never leaves television -agh the horror!). The very thought of being on a plane for 12 hours with someone who doesn't sleep or stop talking is cause enough for a valium prescription. So why do it you say? Only my therapist could really tell you but I'll try.

This year I turn 50. What's that? How can this be? I look so young? Oh go on...really go on, please. Anyway, I want to take a big trip for my 50th and of course take Dakota, so I have been doing some planning. Big trip = long trip and anyone who's ever taken a long trip in a confined area with a child knows it is one of the tortures used by spy agencies around the world. Any child has trouble keeping busy and entertaining themselves on a long trip and in new places and Dakota's situation presents additional problems.

First the flight itself. Dakota is hyper so sleeping is not on his list of possible flight activities; and when he's nervous he talks non-stop. Second is the trip in general. Change is very hard for autistic children to deal with: there is the disruption in their routine, unfamiliar surroundings, a change in food, strangers, possibly even different languages. The combination of these can cause some behavioral changes that are pretty difficult to deal with- for him and us. Sometimes they will withdraw and refuse to participate. In Dakota's case he is more likely to become very animated and loud; do silly things; not listen- even become defiant. I'm learning that when that happens you have to remove him from the situation and the stimulus and get him into something familiar and routine. That is not always easy or convenient to do. And then there is the added difficulty of trying to determine if that is actually the problem or if he is just being a 10 year old kid who wants his way, requiring a whole different response.

How do we deal with all of this on vacation? How do we balance what we need to do to comfort him and help him control himself with not making his behavior the centerpiece of the vacation? Of course if I think he will have that much of a problem perhaps I shouldn't take him; but being away from us for 8 days would be just as hard for him- and us. Maybe the solution is to wait until he is a bit older for a vacation this big, or for when I am a little better at helping him with coping techniques. Or when I am more patient, well none of us have that kind of time and I may not even want to go when I'm 75.

Only the beginning, only just the start

Another year begins and like most people I reflect on the past year. The on and off (mostly off) diet; the wisdom of buying the lifetime insurance policy from AIG; and the really big questions like- if so many people in Congress are having affairs perhaps we really should be pouring more money into 'abstinence only education'.

Invariably my reflection goes beyond the past year and covers years and decades. Ten years ago I never would have thought I would be the mom of an almost 10 year old (Dakota turns 10 on Thursday) and five years ago I did not see as much hope for Dakota's future nor the great challenges that come with an older child with special needs. I went from assuming he would "grow out" of his disabilities and delays, to resigning myself to him never being able to read or hold a complete conversation, to gaining new hope as I hear him begin to read and learn new things. I often think he doesn't understand something and then he fools me when 3 days later he says "Hey mom, did you know that..." and repeats back what I tried to tell him.

My goal this year for myself is that I can spend more moments of hope and promise with him and fewer wasted moments being tired or discouraged. And I will try to remember the rest of the Chicago lyrics "Time passes much too quickly when we're together laughing" and make the moments count. We all get to start again every January 1st. It may be just another day on the calendar but we give ourselves permission on that day to forgive our failures and keep on going. Dakota has to, just as every "Thursday's Child" does, and as long as he is willing I have to make sure I'm able and then start again everyday. A happy and hopeful new year to us all.