Pimptastic

Sam and I were talking about his teacher, Mrs. Wilson, last night--we love her, btw, I mean LOVE her as in would probably adopt her and care for her forever if one could adopt a woman with a child in college, but I digress. Anyway, he's been regaling me with tales of kindergarten each day and all that goes on (which I need to update, but busy, busy, busy). So last night, in one of his particularly rambling chit chats (where he gets that trait, I have no idea), I was sort of tuning him out and just catching every 10th snippet or so, when I heard him say:

And Mrs. Wilson says that we're all stars. We're all really special.

Okay, did I mention that I love her? Seriously. Love.her.

I told him that she was right and of course they were. Then he says to me:

When she says that, I think about being a popular star--and, well, you know, wearing the cool clothes? Like, some red pants, a pinkearring, and I'd have the shiny teeth.

And then he smiles at me and I mentally picture the movie star glint.

I didn't laugh...I'm getting better every day...

and some gold necklaces...you know, with some medallions??"

Still, I didn't laugh, but I'm really intrigued and, he lost me at the earring, so, I clarify in my best Steven Covey, effective leader-repeat-the-person-just-told-you-style:

So, popular people wear red pants, pink earrings and have shiny teeth and wear gold necklaces?

Sam is very serious--and says,

NO!, not a pinkearring, not an earring!! A pinky ring! You know...with a stone..."

and he waggles his finger at me. I bite my tongue and nod.

That would be really cool, Sam.

He nods enthusiastically because frankly, he doesn't need me to tell him what is cool. He knows, thankyouverymuch.

Yeah, I know...oh, and I forgot. I also would wear a red hat, too. Red pants, a pinky ring, some gold neckalaces and the red hat.

audible sigh and then a trademark Sampout

I wish you would buy me some cool clothes...mine are so boring."

Sam Does Kindergarten

Sam is loving life as a member of the acadmic set and I'm beyond relieved. So far, so good. Only a minor meltdown and some talky-things that have been problematic thus far.

It's funny to see him walking the halls and toting his gigantic Superman backpack around. He's thrilled with every thing and that's refreshing. Some highlights:

1. He was so excited to see his lunch. He told me that he had way more than the other kids AND "it was like a buffet!".

2. He has introduced himself to every adult in the building. "I'm Sam. Who are you?". He's a budding politician, I think.

3. He loves his teacher, Mrs. Wilson. He thinks she is very cool and funny. We are BLESSED with her. She has walked him up the hall to my room each day and gets an earful of stories each day.

4. Today he wore his Yellowstone Park shirt which has a bear dressed up as an elk. He had to show it to everyone and explain the joke. He also decided that it would be cool to have the bear dress up as a mutant squirrel and wanted to know why they don't make shirts like those. When I didn't have an answer, he decided that he could just make one when he's a teenager, but HIS mutant squirrel will live in another dimension.

5. He's torn between wanting homework and being mad that he WILL have homework. I'm not sure how that's going to go over--we'll see.

Dear Journal

Sam adores the toys in Happy Meals more than any child alive, so when the Pirates of the Carribean stuff came along just after the tonsillectomy, it actually worked well for us. I had an excuse to get him the crappy-ass little toys and eat Happy Meals. Since I like double cheeseburgers, this was a win-win for both of us.

Of all the toys in the meals, his favorite thing, by far, has been a little journal with a pencil. I must take this moment to say that I 'm all for a cheesy prize that invokes writing or drawing, so kudos to those planners, although when I opened it, I have to admit, I thought, "Fucking a, this sucks and he's going to be pissed off." Happily, I was very wrong and the inflatable sword, which I thought he would love, turned out to be the turkey in the bunch.

Anyway, the journal has given us hours of fun because Sam has decided that this is his diary of sorts and he must, naturally, record his "deepest darkest secrets" in it. The only problem is that Sam can't write or spell, so thankfully, he has to have parents transcribe said secrets for him. It is a blast to see how his mind works--I can't reveal them, of course, but one of the first ones did have to do with Mr. Snuggles, his teddy bear, sleeping with him. He's also tried to gross us out, as well, which is rather disturbing, yet amusing as well (who knew that chewing ones toes was such a vice?). I make him sign each entry so that he can't come back later, when I pull this out to share it with him in his teen years, and insist that I put words in his mouth. All of it is strictly word for word.

Additionally, he has decide to write a pirate story and keeps coming back to his story, in the back of the book, so that we can add what he calls, "the build up". I must say that his English-teaching mother who just spent 20 minutes going over plot diagrams with ninth graders today was MOST impressed and proud of that literary gem. He's very intent that he have "build up" or the story will be boring and no one will read it. All on his own. I just sit there, gaping at the things that he says sometimes and this one took the cake.

He's added a ton of artwork to the journal as well--I'm going to get it scanned someday. It's hilarious to see how his mind works.

Elf Voice...CHECK

Sam came through with flying colors, which was a huge relief. The laser techinique is a huge improvement over the old-version. He's had almost no pain and we've used no meds since Saturday morning.

He does have elf voice, much to our amusement. It's even more funny when he uses his Texas voice on top of the elf voice. Never a dull moment, that's for sure.

He's dying to eat "real" food--that's the hardest part. On Friday afternoon he cried because he couldn't have bologna of all things. He's just about tired of yogurt and popsicles, so we added mac and cheese today. I have a feeling that **I** going to be tired of that one in a few days, but if it makes him happy, we'll deal with it.

Ready for Surgery...

Sam's having his tonsils out tomorrow and he's quite excited. He's talked about it for days and any bad behavior, strange comment, errant action, etc. has been blamed on "the tonsils acting weird". At random, we discuss the tonsils. He also likes to have people look at them, and I do have to admit, they are quite impressive to see--gigantic doesn't even come close to describing.

When oldest brother had his out lo, those many years ago (nine, at least, wow), he had this odd little elf voice, so as we've been preparing Sam for the post-operative "issues" (pain, thirst, grogginess, etc), I also mentioned that his voice might be a little strange. I told him that Five sounded like an elf. He pondered this for a moment and thend asked:

"I wonder if I'll sound different. Do you think I'll sound British?"

And so, he's been practicing the accent--just in case. Then, out of the blue, today, he told MIL that he may also end up sounding like he's from Texas.

Either way, I have a feeling that tomorrow and the weekend that follows shall be quite interesting.

Sam Does Love To Dine Out

And as one might imagine, we never know what to expect. He is not much of an eater, so he ends up with too much time on his hands and gets into various "situations". He also has volume-control issues, so we're forever having to shush him. Then, there's the probability that he will talk to a complete stranger before we can stop him or anticipate what he's going to say.

Sunday night, we took Sam and Jay to eat Chinese--Sam's favorite type of restaurant. I think that is in large part due to the fact that he can make a meal off of chicken and ice cream, but he eats himself silly, so we go. It's one of the few places we probably get our money's worth for his meal. And, just like most trips, he didn't disappoint--he had done so well with not blurting out random comments to people, but, finally, he couldn't control himself:

"Pardon me, are you an employee here?"

This was Sam's question to a server at the Chinese buffet restaurant last night. I wasn't sure where to find a bowl for ice cream, so he immediately took it upon himself to solve the problem--after all, a boy needs his ice cream, right? I was most proud of his manners and his sentence and even complimented him on his nice questions. It's a fine line, of course, since the next time he might just as easily ask someone why they are so old, or why that man's teeth look rotten. But this time, he did well. and the look on the lady's face was priceless as she told him that she was and then directed us to the bowls.

Sam was soon enjoying a bowl of rainbow sherbert which he has named, "Wild and Reckless"...the perfect dessert for the kid who for no apparent reason decided to use his body to form a human letter E on the floor by the buffet earlier, if you ask me (he was most pissed that I didn't applaud his efforts and instead chastized him for being on the floor. I did give him mad props for his interpretation of F a few moment later since he did that one vertically, albeit while blocking the lo mein, but it was definitely an improvement).

Oh, and somehow he managed to eat a piece of black olive that was on his pizza (obviously not a totally traditional Chinese buffet, eh, but quite good), so he was traumatized. Convinced that the olive was burning his tonsils and stomach due to some weird acid found only in olives, he was hesitant to consider that maybe, just maybe it was the spicey pizza sauce. Various olive comments came up from time to time throughout the meal (he was most proud of himself for "eating a vegetable), but I thought the topic was pretty much closed...which of course, it wasn't. The first thing he said to me this morning? "I guess I survived from eating that olive since I'm alive today."

Olive trauma. I'm sure somewhere later in life, there will be therapy for this.

Just a Word of Caution

I'm going to be working on web stuff this weekend--updating ugly things, moving files and hopefully getting everything that is supposed to be active, active. This will, of course, cause things to go boom at some point. But I'll be back, of course. You shan't get rid of me that easily.

The Patriot

Sam was most impressed with the Fourth of July. It was, I think, a highlight of the summer for him. We didn't do anything particularly spectacular--a swim party, a cookout, and watching fireworks at the house with sparklers at the end with the usual suspects...a group that ends up totaling 12 or 13 kids, a few dogs, a grandmother and various parents.

All day, Sam would ask randomly, "Is it Fourth of July?" The concept of time is still a bit vague...don't even ask him what day it is and time of day? He refers to his invisible watch and choses alternately between 10 o'clock and 4 o'clock at any time that he needs to know a time... but anyway. When it was affirmed that it was still the Fourth of July, he would gleefully clap or give a cheer and then go on about his business--which, I am happy to say included jumping into the pool on his own and going under over and over while wearing his vest. Huge step for Mr. I Hate to Get My Face Wet.

Turns out, he really didn't care diddly about any one aspect of the Fourth--he certainly wasn't overcome with patriotic fervor. He was rather partial to the unfettered access to marshmallows and the finale of birthday cake and the fact that he was able to also snag to minicupcakes...he ended up managing to miss the actual "meal" part of the day and only ate some macaroni and cheese for dinner as an afterthought. I thought maybe the fireworks were what he was excited about, but when it came time to watch, he was totally bored and saw about one explosion and was done with that. He did enjoy the sparklers and the snap-pops, and that was definitely a "biggie" for him, but I think that he was just excited about the idea that it was an important day and he knew that it was an important day and a cause for excitement and he was excited to be a part of that somehow.

Today he asked me what "today is". I told him July 5th. He was visibly excited--"that means that there's fireworks and a party again tonight, right?" When I told him no, it meant that we're cleaning the house and going to the dump, he frowned and said, "I thnk I like holidays better. When is it the Fourth of July again?"

And Now a Few Words From Our Expert.....

Met with our new developmenta pediatrician at
Vanderbilt's Center for Child Development. We had a nice long meeting with Dr. Robert Couch who spent a couple of hours getting to know Sam and assessing his present situation. Lots of questions, drawing, a minor physical exam to check for balance, muscle tone, control, etc. Sam's sensory problems came out in full-swing as the doctor dared to try to lift him from the floor--you'd have thought that he was trying to skin him alive. It was panic-enducing. After about 15 minutes, at least, Sam was comfortable enough with him and the idea to let him pick him up (with arms straight at his side) about three inches from the floor and the "drop" him. He never would relax enough to lie in the doctor's lap on his stomach and "fly" across--we did see that he had the trunk strength to hold himself, but that was as far as we got. He was absolutely petrified to be suspended in that manner, which was actually new to me. I'll be looking at things we can do to work on that.

There was nothing earthshattering discovered at the appointment. He agreed with the dx and also agreed that Sam is very mild. So mild, in fact, that he might not even qualify for a couple of studies that are going on at Vanderbilt now (one is a sleep study and one is a gene study) or in the future, but he gave me information on both of them. He agreed with me that Sam's best bet for achievement in the classroom and beyond will be to give him a high-dose of interventions NOW while he is so malleable. He also pointed out that I should stress to the IEP team that an assistant in the classroom will be for the TEACHER to help teach Sam, NOT to do Sam's work for him. I've got to remember to make that disctinction.

He was impressed with Sam's vocabulary and imagination and discussions as most people are, but said at this point any further testing was needless since we have the dx and the services are being given. If, at some point, we are denied services that I think are needed due to his clearly flawed IQ score (since IQ isn't even valid at this age), then he said we might address it then. He also said that the only other reason to really delve into Sam's brain right now would be to try to look for causation, but in 90% or more of the kids with Autism Spectrum, there wasn't anything to single out, so that was generally a waste of time AND it wasn't as if things were going to be "healed" when we found them, so why go through it? We did agree that since my oldest son is very similar to Sam in a number of ways that this is probably a genetic thing (I'm seriously thinkning of having #1 tested on the Gilliam's scale).

As for any types of "treatments", he wrote scrips for Planguage therapy and OT in addition to whatever the school offers, warning me to keep in mind that they only have to offer what is "educationally necessary". He briefly mentioned that some children who are as, uh, "chatty" as Sam end up using some meds for ADHD, but he didn't think that it was appropriate to consider that yet since Sam was so young and we'd not had a chance to work on his classroom goals via behavioral methods yet. He also gave me the name of some resources at Vandy that I may need to use for the school and/or Sam's teacher--they offer training and even come to the schools for inservices or observations if our system is a client (I'm going to find out about that, too). He showed me some books that one of their educator uses that incorporate Visual Strategies in a number of ways. There are some great ideas for the classroom as well as at home. I'm going to purchase one of them for myself and then have a catalog with me for the teacher.

We go back in the spring. I want to check in with him and the educator to see where Sam is after half a year of kindergarten or so. I'll bring his IEP and ask them to look at it with me and see if they have any suggestions, additions, etc. I told Dr. Couch that my biggest fear was that I wasn't going to be able to get Sam the education that he needed and that he would miss out because we weren't dealing with him in the best way. I'm terrified that he'll just go to school and either flounder or roll along at his own pace, but in either situation, never realize his maximum potential. Of all my kids, he's the one whom I feel will be the most challenging to educate, not just because of the Aspergers, but also because of what I think is inside that head of his and I don't want a second rate education and lack of enrichment to be the difference between an adult who is able to realize a career with no limits and an adult who is miserable and can't hold a job or be happy doing anything.

Is This How Spielberg Got His Start?

Sam has many careers that he intends to pursue in his adult life. Number one is a lifeguard right now, although, I have to admit that with each passing swim lesson I do wonder about the plausibility of that aspiration, but that's for another post. He also flips between wanting to be a fireman and a superhero--totally age appropriate goals, yes? Of course.

But his abiding passion lies in the world of drama, which comes as no shock to anyone that knows him. His imaginiation is the core of his essence and if any of my children have inherited any of my positive traits, it is Sam and his ability to improvise, imagine and create. It's as if every microcosim of my creative DNA that was intended for all three children was transferred to Sam by mistake. From an early age, we've played "The Emotion Game" where he acts out different emotions (as if the name wasn't indicative) and he's taken role-playing to an extreme. He crafts intricate stories and then repeats them over and over, changing characters, making his own sound effects, assigning other people supporting roles, etc. It's really something to behold when he's "on" in one of his story-modes. HOne of his more recent themes dealt with something called Shang Gon Wu or something such crap that he's picked up from television with the brothers and I have to admit, that one isn't nearly much fun as Jack and the Beanstalk was. He is also quite fond of a small "friend" that he's made out of Magnetix whom he calls "Little Jack." Little Jack is good for hours of fun and adventure--except for the unfortunate times when Sam loses Little Jack's neck (it's made from one of the teeny little magnets out of the end of a Magnetix stick piece).

Naturally since I'm a drama person, I have encouraged the dramatic play (to a point--and then even I have had enough of Little Jack or being a family of owls). I explained the concept of actors to Sam a couple of years ago and asked him if he wanted to be an actor someday. He thought that sounded like a grand idea. For about two days. Then, after careful consideration on his part, he informed me, at age 3, that he didn't want to be an actor. He wants to be "a corrector". That, btw, is Sam-speak, for director. Correctors, you see, get to tell the other people what to do and they get to make up the stories. He hasn't been interested in the whole acting thing since, as a profession anyway. He likes to act, yes, but only to bring his ideas to life since he cannot stand to have them bottled up inside his head.

Which leads me to the current conundrum--he has decided it is time that he "go ahead and make a movie now, so the people can come see it at the theatres (which he pronounces fee-aters)." At first, I sort of dismissed the idea, but I should have known better and any mother of a child with even the slighests Aspergian tendencies is probably laughging at me for even entertaining the idea that he would "just forget about it". This idea ain't going anywhere any time soon.

The vague idea of making a movie has now turned into a project with:

• A title-Dracula Returns
• A "genre"--a "brand new" kind of horror movie for the people who like horror movies and think they are "cool"
• Two protagonists-"Let's just say they are two ridiculous men in white".
• Special effects--he'd like to have Dracula "suck all the blood out of the victim's neck" so that will "freak the people out". He thought maybe he could use goat blood, but we've compromised with Kool-Aid.
• Marketing--"we're gonna make posters all over the town".
• Product tie in--"If we buy that popcorn (he saw at Wal Mart), we can use it for the people who come to see my movie and give them a prize".
• Funding source--we should have either a lemonade stand or a garage sale. Or both. Or "maybe Dad can get another job."
• Leading actor--Big brother Five gets the honors because if Sam played Dracula, "Dracula would be shorter than everyone else and who would be scared of that?"
• Makeup/costumes--Five gets to wear lipstick, but not the kind that "looks like a girl" and we have to draw black circles around his eyes, too. There's also wax involved, but I can't for the life of me figure out how.
  
• Tag line/summary: "Dracula Returns--this time he's back and he's got a plan. He's gonna make himself the master of all dead and Halloween scary tales."

Like I said, this one isn't going away anytime soon, oh and also, just a disclaimer: The child has never seen a Dracula movie or anything in the horror genre in his entire life. I have no idea where he's come up with these things.

So, being the "creative" mommy that I am, I've been offering up a myriad of affordable and techno-simple suggestions, which have been met with disapproval on any number of levels:

1. Suggestion--We could draw pictures of his ideas and then hang them up on the fridge like a cartoon. Reply--"That's not a movie!"(his tone of voice clearly indicated that he thought the idea was totally "lame", but to his credit he didn't say so).
2. Suggestion-We could take the pictures and scan them to the computer. Reply--"But they wouldn't move. And what about the sound?".
3. Suggestion--We could let him tell the story to us one night like a play. Reply--"Uh, then how would the rest of the town see it? And what about the screen?"
4. Suggestion--"We take pictures with the digital camera of the scenes." Reply--see suggestions 1 and 2. Add in, "You won't let me use the camera by myself."
   
5. Suggestion--We use action figures to act out the movie and Sam can be the voices--Reply--"But my hands would be in the movie. You can't have a movie with hands in it!" (if I could have only captured the expression on film...I'm not sure if he was offended that I thought Rescue Heroes were an option or if he was puzzled that his own mother was that stupid....I really think it was the later).

In other words, I suppose I'm going to be finding some sort of video equipment that is adequate for a five-year-old's cinematic vision and cheap enough that when he drops it/steps on it/tries to pry open the door with his finger instead of the pushing a button his mommy won't have a stroke. I've got until his birthday, I think, to figure this out, if I'm lucky. September 15 is a looong time away, but I'm hoping that I can distract him with little mini-movies on my digital camera for now. The sound isn't too great, but he loves to see the movement, so it's still novel...but not for long, I'm sure. I'll rig something up in Windows Movie Maker to amuse him, too. It could be worse, I guess. He could want to be a surgeon.

Oh, and he also thinks we need "one of those stands to put the camera on", too. I'm sure if he thinks long enough, he'll want one of the clackers and a chair, too.

Money is the Root of All Evil

I've been following the debate of vax vs. no-vax since my oldest son was young...long before there was a Sam. When my middle child, Jay, was born, it was in the heat of the vax vs. no vax debates and the Wakefield furor was in full swing. I well-remember the long, passionate debates on various parenting boards about the evil things that vaccinations could do and how terrible parents were for poisoning their children. I wondered then how anyone could possibly believe that a vaccination could cause autism or how an entire industry could be in some sort of conspiracy to cover up this poisoning. Being selfish, I was horrified at the thought of parents letting their children go around at risk for carrying disease and exposing my children and me to who knows what. And I wondered--what will come of this. When will this end?

And now, the infamous Dr. Andrew Wakefield who kicked up all the fuss in the beginning is facing all manner of professional woes as a result of the claims he made linking autism to the MMR vax in 1998. Wakefield, who oops, forgot to mention that 11 of the 12 subjects of his study were suing the vaccine maker and that he was, oops again, being paid by their legal firm, sent parents into a panic around the UK and the world with his little "study" and vaccination rates plummeted.
He got what he needed, though.He was a star and his case was, to an extent, made, or so he thought, I suppose. I wonder

"There was
never
one shred of verified evidence in his work...no basis whatsoever for his claim."
Brent Taylor, Royal Free medical school

if he really thought that his little paper in The Lancet would have the impact that it did? Or that so many people would jump on board with both feet in such a manner? But jump, they did. His peers, jumped, too, though, and some of the other authors of the study jumped right off the paper. He stuck to the story though. For six years. And people believed. Funny how the autism rate didn't plummet, though. Of course, there were any manner of excuses for that, and there were studies and God only knows how much research money was poured into trying to duplicate Wakefield's results or to come up with something to validate his claim.

But, even though the truth behind Wakefield's affiliations was eventually revealed by The London Times in 2004, the damage was done. That's what happens when a conspiracy takes root. By then it was too late. Autism and

"The long-term
consequences of inadequate control of gonadal steroid secretions are
unknown..."
Product Insert, Lupron

mercury and the treatment thereof were a cottage industry and you know what that means, don't you? Money. A boatload of it and don't for one minute think that anyone who has been making money off of any number of insanely expensive treatments that would never have been considered, much less approved by the average soccer mom, is going to be stopped by something like a few pesky facts. The treatments and protocols and practioners increase annually. There are studies and charities and foundations and reports and petitions. You can travel across the country to any number of treatment facilities to spend thousands of dollars on experimental ideas. Meanwhile, on the internet, self-proclaimed Institutional Review Board in Maryland approves the study done by its own members...members who propose using Lupron, among other things, to help chelate mercury from children. Lupron, btw, for those who don't know, is also used for chemical castration, treatment of prostate cancer and endometriosis. I'm sure it isn't cheap, either. And I'm guessing the doctor visits--or whomever is prescribing this stuff--aren't free either. But it's a business.


And so it grows.

But in the UK, the measles do, too.

I Was Militantly Strident Today...

and I don't mean that in a good way, as if there is one. Back when I was pregnant with Jay (the middle child) and Sam, I was active in pregnancy boards and later in parenting boards and I was always quick to avoid the dreaded MBF groups---the Militant Breast Feeders. While I was a firm believer in the benefits of breastfeeding and practiced it with all three of my children, I never understood how anyone could see the attack and belittle mode of "conversion" as one that would ever be effective. So today, when the issue of mercury causing autism came up, I was introduced first-hand to what happens when passion and reason clash.

Sam's friend, D., is taking swim lessons with him and D. is also autistic. D. was born the same week at the same hospital and was adopted by SIL's close friend, so we've known him all his life. We've discussed the autismy stuff before, but the topic of mercury/autism never came up.

And today, it did.

I'm normally a fairly rational, logical person who tries to think out answers and listen, then respond, but today, I was absolutely overbearing and just flat-out obnoxious. I don't know what came over me, but it was as if I'd been taken over by Bill O'Reilly's evil spirit or something.

When swim lessons were over and Sam and I were in the car, I felt ill. I just wanted to get home ASAP and go to bed. Or hide. Or cry. How very grown-up of me. Instead, I logged on and updated the template here and calmed myself down a bit and then thought about what the rational thing to do was.

Obviously, I have to apologize tomorrow. I was beyond rude. But I also need to gather some actual information instead of just saying, "The data is flawed" and, "That theory was never proven." And I also need to just take a step back and realize that sometimes it's better to keep some...battles?...in the cyber world and not IRL..or at least not in a friendship.

Super Swimmer

We started swimming today. It went better than I ever expected. Before we even went in, Sam and I had a talk about being a good "student" and not asking a lot of questions. We went over turning our ears on to pay attention and zipping up the talking mouth so that he could learn.

There ended up only being four kids in the class, so the ratio was great and Sam wasn't able to get too distracted. He put his face in the water and even held his breath and looked for something. When class was over, he told me that he'd learned an important lesson today:

"There's no need to be afraid of your fears. You just have to do it."

This, from a five-year-old. He's smart, the Sam.

We Are Who We Are

I've been very, oh, obsessive on the topic of autism and specifically Aspergers Syndrome as of late, which is what led to this blog. I've read countless debates and papers and studies and opinions to the point where I felt as if my brain would blow.

And still, it means nothing, really.

Because Sam is Sam is Sam.

He doesn't meet all the criteria and he's not the typical AS kid. There are some who would say that he's not autistic. That he doesn't fall in the "spectrum". And others who meet him and instantly go, "Aspergers". Still others, I'm sure, think, "Wow, spoiled rotten brat." He's a five-year-old (almost six) with the vocabulary of twelve-year-old, the attention span of a two-year-old, the size of a four-year-old, the emotional development of three-year-old, and the interests of everyone in between. He's a little OCD, a shade ADD, probably and has had some SID issues, to boot. He's also a hella good actor, a marvelous story teller, a wickedly funny prankster and the self-proclaimed "King of Disco". So what to label, eh?

Well, that's where the title of the blog comes from. I'm sure that we could probably find about a dozen or so "disorders" and dxs to tag him with if we looked closely enough, but for what? Insurance and IEP purposes, I suppose. And treatment in as much as I want him to have the approriate language and occupational therapies and such, but it isn't as if I'm going to pump him full of the latest cure of the day or trek around the country subjecting him to faux doctors and whacked theories, so on paper, it's Aspergers. I can advocate for that. I can push for awareness and let people see that it doesn't automatically mean Rain Man.

But, in the meantime, for me anyway, it's simply Samsperger. Not a syndrome, not an illness, just...Sam.

Sam's Kindergarten Physical

first of all, he had to pee in a cup ahead of time. This, to Sam, was probably the most exciting event of the summer. I told him about it the day before because I wasn't sure how he would react to it AND I figured he would help me remember. His first reaction? "In a cup? Why? Are they going to drink it?" Then, once I assured him that it was for examiniation purposes only, he was fascinated with the idea and was eager to tell anyone who would listen that he was going to get to pee in a cup...this included people at McDonald's who really DIDN'T need to know, but were polite.

He peed in the cup Wednesday night and then Thursday morning he reminded me to bring the pee and we promptly left the house, drove all the way to the ped and I realized that I had forgotten it, so we had to go back. Ugh. Back across town and then back. As I signed him in, he annouced to the receptionist, "We had to go home because we forgot my pee in a cup." Nice.

We worked on his alphabet workbook in the lobby while we waited and when he finished a page, I told him to write his name at the top of the page. He looked at me very seriously and asked, "Why? Is it a contract?" I had no immediate answer for that one. Uh, no, Sam, we just write a name on it...look, there's the letter F.

Linda, our nurse called him back, and as you can guess, he announced, "We brought my pee!" The other people in the lobby were amused. Linda ushered him into the first room and had him take off his shoes, but first, I had to hand off the cup so he could refocus. As soon as she set it on the counter, he asked her, "Well, are you going to scan it?" I don't know what kind of tests he'd conjured up in his head...now I wish I had asked him to draw a picture. She told him she would later and had him step on the scale, which he thought was some sort of "robotic ruler" and then measured him. He was very excited to know that he was now 44' and 44 lbs. and was thus "very big now!". He asked her if she was "impressed." She was, of course.

We moved on to the exam room. There she put him on the table and told him she was going to do his blood pressure and that it would squeeze his arm a little bit, which, naturally, he remembered and he described for her in play-by-play detail from a visit he dredged up from God knows where in his memory. She was eventually able to check his pressure and he was pleasantly surprised to learn that it didn't hurt anymore. Thank God. She left--with strict orders from Sam to "go scan the pee now, please."

We waited--and he worked in his workbook--and he asked about 32 questions about what else they were going to do. We'd tentatively told him there might be "pokes", so he was beginning to obsess on that. He was also not sure what a stethoscope was and how did it listen to his lungs--he'd confused it with an X Ray. I was explaining that for the 12th time when the hearing and eye test tech came in. We headed to her screening room--there wasn't enough room for me. Darn. She said I could go wait in the other room. As I left, he was telling her about, you guessed it, the pee in a cup and he might have to get "poked" today. Blessherheart.

He returned--all normal.

Doctor T. came in. He'd not seen Sam in awhile, so he gave the appropriate oohs and ahhs over his growth (which Sam totally appreciated and hammed up for) and chatted him up a bit. The pee, for some reason, didn't even come up. I think Sam was too impressed by the steth.

As they talked, Sam somehow showed him his fingers, which have some remnants of burn-blisters on them. Dr. T. inspected them and asked him where they came from. Sam said, "I touched a muffler." Very matter of factly. Dr. T. seemed a bit taken aback (and looked at me). Not that I think he would call DCS on me or anything, I prompted Sam, "And Sam, WHY did you touch the muffler?"

Sam's answer, "Because I didn't believe it was hot." Dr. T. did a double take. Sam grinned. (He'd been with W. and his friend Mike. Mike had his motorcycle. Mike got off the motorcycle and let Sam look at the motorcycle, which he's done 1,000 times before. He was cautioning Sam about getting on one without an adult, etc. and then said, NEVER touch the muffler, it's very hot. Sam looked at him and W. and then, before they could even blink reached right down and just touched it.) Dr. T. said, "Well, that wasn't very wise, was it?" Sam said, "No--I believe them now. Won't do THAT again. But it didn't look hot."

Then the exam. Sam did very well, although when Dr. T. examined his eyes, Sam complained bitterly that his eyes were "burned like lasers" and he never DID figure out how the stethoscope worked. He was not all sure why the doctor needed to check his stomach out since there was nothing wrong and that lead to a discussion which divereted him, thank God, so he didn't even seem to notice when he check out his penis. I can't even IMAGINE what he would have said about that if he'd not been otherwise engaged. He insisted that the doctor see his muscles. When we talked about safety and swimming, Sam had several thoughts on water/swim lessons/Nana's pool, etc.

As he left, Dr. T. mentioned that he needed his last three immunzations and we discussed them. Then he told Sam it was good to see him, etc. Did he want some stickers? No, no stickers. Then he mentioned that he had some that you could "dress" and Sam perked up and took the stickers. Then, as Dr. T. was leaving, Sam said, "I thought you were going to give me some shots?" He seemed relieved and accusatory at the same time. Dr. T. explained that he wasn't any good at giving shots and that Linda was going to do that for him instead. Sam was immeditely very distressed and began to whimper. Dr. T. told him that Linda was "the best shot giver around" and that she gave him HIS shots every year and she gave Jay his shots, too. Sam wanted to know why he had to HAVE shots...more discussion ensued. Lots more. This is why I would pay Dr. T. in blood if I had to. He is so patient and he explained everything to Sam in just enough "detail" that he was satisfied, but not freaked out and not left asking questions.

When he left, Sam had four set of fireman stickers to "dress" and Dr. T. said, "You can make them all look different." Silly Dr. T. Sam immediately did one and then said, "Cool. Now I can make clones!!" And damn, if he didn't come as close to making clones as a 5-year-old with fine motor delays using tiny little stickers could possibly do. It was freaky. Then he started mixing them up and giving them weird body parts....until....

Shot time. He did so well, overall. I was very proud of him. Three pokes and it was over. He flinched on the first one, so I had to hold his arm better. Then, on the second one, he asked me to hold his arm and when I did, I accidently squished his hand. The only upside to that is he was so distracted by the squish that Linda had the other two shots done before he knew what was happening. Then, in the hubbub, I leaned on his foot and caused further insult. It took about 30 seconds to calm him down and then he realized it was all over and he said, "that really hurt me". I praised him for being so brave and he got a hug and then he wiped his face and nodded. He looked around. Linda handed me the papers, I got him down from the table and told him we could go. He stopped cold and turned to Linda and asked her, "Wait! We can't leave yet. When will you do the test?"

Test? We did all tests.

"The test on my pee!"

Oh, that test. I told him she'd already done that test. She did it when we first got there. In her little room.

"Well, I want to see the test."

I'm speechless. See the test? Uh, Sam, there's nothing to see. Poor Linda. She's probably never heard this one before.

"You mean I can't see the scan? I wanted to seeeeee the testtttttt! You said we'd see the test!"

I hand Sam the receipt/diagnosis form. "Look Sam, it's in writing. That's all there is to see." Linda leaves. We move down the hall. Sam walks out behind me.

"You've got to be kidding me. This is it?"

I guess he expected something a bit more....techinical? *sigh*

Who, What, When, Where, How, and Why...

This is a blog about Sam specificially and, by default, the Autism Syndrome that I am only just beginning to really delve into despite the fact that he's had that phrase "attached" to him for well over a year now. I find myself telling lots of Sam stories and it seemed only fitting to start putting them all in one place so that I could refer back to them one day when he is wildly rich and famous after having pursued some very creative and artisitic field. I've already annointed him as "the child who will support me in my old age" and we affectionatly call him our little Spielberg. He is, the Samster, very much the "corrector" in training--just ask him.

I don't much like the whole "diagnosis" of Aspergers, but it will do for now. Some of it is very fitting for Sam, some of it--not at all. Since it is a "spectrum" disorder, you have to sort of grab at behaviors here and there, which makes things a little murky, IMO, and can lead to just about every kid on the planet having some Aspergerian tendencies if you want them, too, but, honestly, there is certainly no denying that he is "classic" in some senses and we're using that to guide us anyway. I feel that we're only just beginning to really unlock the things that are going on in that head of his and we may have many things yet to discover along the way. It's rather fascinating to watch the process unfold, really, although in the beginning I was in denial and then overwhelmed with the whole idea that he wasn't going to be "normal"--whatever that might be.

There is a great deal about Aspergers on the web--some of it is factual, some of it is opinion and some of it is just downright crap. One has to read and weed with a critical eye. Sam is definitely a "high functioning" child with Aspergers (that sounds so yuck to me). He appears neurotypical or NT to most people in most settings. I'm sure that no one would ever look at him and say, "Wow, look at that autistic kid" or "He's in special ed", which is, I suppose, a "good" thing, but then again, when he is having a stage 4 melt down in Kroger over something trivial, when he's making loud space alien beeps and squeals, or he tells some woman that she looks really old and scary, it would be nice for them to understand WHY he does what he does instead of just having people stare and point or glare.

I struggle with how to deal with what to tell people or if I should tell people. He's getting to the age where some of his behaviors are a little bit "odd", so I feel like we need to explain him, but then I end up sounding as if I'm trying to pity him or label him or something so I don't say anything. Then again, in some situations, such as Sunday school or even at the dentist as I discovered, they actually really do need to know his situation so that they can better communicate with him or understand why he reacts a certain way. It's frustrating.

Broken down, I would classify his Aspergers characteristics as:

• social: he is very immature, doesn't handle transitions well, has trouble with things such as sharing, waiting, expressing emotions appropriately, talks out of turn, blurts things out without regard for other people's feelings;
  
• receptive language: he doesn't always process what people say correctly, he doesn't always process multi-step directions;
• obsessive: he fixates on certain subjects or ideas, such as being imaginary characters or animals (this is his all-time favorite things), he makes lots of weird sound effects, he loves to talk about HIS subjects and can't refocus until he's finished;
  
• language: he uses stock phrases that he has picked up from other people to cover himself in uncertain social situations; he likes to tell other people what to say and insists that they use his "script" word for word and he won't drop the subject until that has been completed; repeats storylines that he creates for himself over and over;
• anti-social: talks about certain subjects to the exclusion of others and doesn't really care to hear what other people have to say; he plays alone for hours, although he likes to be in the same room with other people (usually adults), he has a hard time actually interacting with other children; is able to lose himself in the same activity and talk to himself about it outloud endlessly;
• fine motor delays: about 1 year delay; ambidextrious; hated to draw or color or do anything with his hands until he was about 4;
• sensory issues: doesn't like to get his hands sticky or dirty; prefers soft foods and liquids; picky eater; hoardes sweets; panics when he gets his hands dirty and wipes them on walls, counters, floors, etc.; loves showers, baths, water and would stay in them for hours;
• IQ: officially he is average (99 composite); verbal language is probably off the charts for his age; the 99 on the Weschler was after completing about 2/3 of the test and his averages on the K-Seals (Kaufman Survey of Early Academic and Language Skills) ranged from 95-101 after he finished about 1/2-2/3 of the test (the testers comment: Sam waas not interested in completing the measure and much encouragement was needed to maintain his level of performance. lol--that is the understatement of the decade. She had to bribe him with Star Wars stickers to get him to even sit down at one point. He was trying to get her to duel with pencils for anything that involved drawuing. The entire written portion of the Weshler had an X and a mark and that was it, I think) . These were given when he was 4. We've not done any further testing of this nature, but he has made significant strides in his ability to participate in these types of activities, so we may ask to have further testing done--or we may just wait until he's up for recert.
  

His "non" Aspergers characteristics:

• He has a keen sense of humor. Loves jokes and loves to laugh. Loves "pranks"
• He is very empathetic and compassionate, although not always at the time of his actions.
• His language is expressive and colorful and vibrant. Not monotone at all.
• He craves physical contact.
• He doesn't have significant gross motor delays.
• He doesn't have true "obsession" over any one specific topic. His varies from day to day.
• He is very social and outgoing when the situation warrants. Loves parties, crowds, school.

The official testing info:

• Gilliams Aspergers Quotient: Based on the assessment that I filled out at the time he was tested, he had a standard score of 88. His daycare provider gave him a standard score of 92. On both of our assessments, the key areas were his pragmatic skills and social interactions.
• Childhood Autism Rating Scale: 34, which qualified as Mild/Moderate

What does the average person see? They see a very talkative, imaginative, happy, slightly immature kiddo who has an insane vocabulary and a goofy sense of humor who has never met a stranger or a person who doesn't need to hear a story. That's fine by me. For now, that's exactly what I want them to see because that's exactly what Sam is. I've got no desire to change who he is. He's a remarkable child. The trick is going to be helping him navigate the choppy waters that lie just ahead of him--when it's not enough to just be cute and funny and talky. I'm okay with him being HIM, but I don't want him to be stigmatized or traumatized for doing something that is inappropriate with his peer group when he could have easily learned how to avoid doing that. So it's a fine line---how much to rein in and how much to let go. What is a quirk and what is a bad habit? That is the million dollar question and one that we'll be grappling with for the next several years. The good thing is, Sam loves questions. He asks about 432 of them a day, so questions are right up his alley. I'm sure, when all is said and done, he'll be the one who figures out most of the answers for us anyway.