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.