Tuesday, May 28, 2013

Ignorance: The Medias and My Own

    I have beat myself up so much, over the last year or so, for the ignorance and unsolicited sympathy I had towards autism and the families affected, that I'm surprised I don't have actual bruises. All of the times I did the things I've grown to hate to other parents with special needs kids: saying "I'm sorry" the second they mention the disorder, try to relate with the old "my neighbor's cousin's best friend's kid goes to school with someone who has autism," and then try to reassure them that their kid I had spent ten minutes with "seemed perfectly normal to me." The list goes on and on and I'm sure you could think of a few before you are even done reading this post.

    I can remember back to just after we got married, to a family event with a very close family friend, his wife and children, one of whom is autistic. Their son played rough nearly all night with Alex, beating him up and nearly exhausting him in a matter of an hour or two, he even insisted on sitting on Alex's foot and having him walk around with him hugging his leg. The whole drive home was talk about how we could never handle that all the time, how he was almost 4 and not talking, extremely rough and full on nearly endless energy. We pitied our friends for what they had to go through, and not that I believe in karma but I think God does have a good way of teaching us lessons and helping us grow. I'm not saying that these feelings led to our son's disorder as some cosmic punishment, rather the vivid memory of my exact emotions from that night humbles me and reminds me that I once was rude, insensitive and ignorant and I can't expect others to be any different than I myself were a mere few years ago.

     Recently my husband saw that "Rain Man" was on Netflix. A movie that I had never seen and had only heard reference when someone was looking for a "polite" way to call someone "retarded." Since becoming an "autism mom," I've read more blog post, facebook comments and articles over the last year than the prior years of internet use combine and in the autism community "Rain Man" is referenced to A LOT! But in a very negative light. Googling the phase "my kid is not rain man" gave me 140 million results in less than half a second! So clearly this is a common thought.

     Now before having watching this movie, I'm ashamed to say I jumped on that bandwagon. I simply judged with the court of public opinion without forming my own view point, without witnessing first hand what the movie even had to say about autism. My husband, in all his wisdom, pointed this out to me and not wanting to stick with this flawed mindset, I watched the movie.

     Now to get a real idea of how old this movie and information in it is, keep in mind that I wasn't even alive when it was in theaters. That being said, the description of autism to Tom Cruise's character in the first meeting scene is still factually true, though grossly oversimplified. They hardly scratch the surface of what autism is and why its not a mental illness, but at least they make a point of saying he's not "crazy" or "retarded" for what its worth.

     In nearly 25 years there hasn't been any huge leaps in the understanding of autism, what causes it and it changes the brain. Though, their definition of "high-functioning" is something I think most people get have an issue with. Raymond didn't receive any early intervention services as far as the movie tells us, he was simply dumped in a facility and his needs catered to, he basically lived in a bubble. So for him to be talking and expressive without therapy, he probably was very high functioning in a sense. Imagine what kind of adult he could have developed into if he had received modern therapy or even the therapy Temple Grandin received in the 50's? Nowadays, a lot of the behaviors he had are usually worked on in the first few years of early intervention and not nearly as noticeable in adulthood for high functioning individuals. I think its also important to point out that a lot of the people we now refer to as "high functioning" wouldn't have even been on the spectrum by early 90's standards, with time and research the parameters of the testing standards are very different now and still changing.

please note that h/f and l/f are not the same as severe/mildly autistic.
You can have severe autistic traits, like extreme sensory issues
and be completely able to live independently etc.

Please also note that this visual is my guess/opinion
of where he would be, NOT a medical opinion.

     The other major issue I think most parents have with the movie is the "magic power" mentality. In the movie, Raymond has the amazing ability to do complex math in his head. This can be a "side effect" of autism but to this level of amazing is very rare, on a more realistic scale autistic people do tend to have a special ability to understand one topic very well and lack understanding in other areas, such as social skills. Similar to a blind person having acute hearing. This part of the movie is clearly inflated due to the fact that IT'S HOLLYWOOD! It just makes for a better story from a screenwriter's standpoint.

     To be completely honest, I can't really say whether the idea of "Rain Man" offends me or not. I've only meet a few autistic adults very briefly and mostly out of shyness I've trying to not seem too nosy. So as far as how that relates to Xander, I don't know. Maybe when he gets older and we start to get a true grip on his learning skills and level of intelligence, I'll have a better understanding on how this movie affects me emotionally.

     I was just about to suggest that it would be a good idea to make an updated portrayal of a high functioning autistic person in today's society when I realized its far more common than we even realize. Characters like the main character in "Bones," Temperance Brennan, the son from "Parenthood," Dr. Spencer Reid from "Criminal Minds" and Sheldon from "The Big Bang Theory" all display signs of being on the spectrum (some confirmed in canon). These shows give a much better, though still dramatized, view of autism in real life. "Rain Man" is out of date mainly because a lot of people on the spectrum now, thanks to better early intervention services, are hardly distinguishable and Raymond's character, more or less, just further spreads a false stigma about what it really means to be high functioning in today's world.

    But just as I have learned to forgive myself over past ignorance, I think we need to cut this movie a little slack. Their heart was in the right place and while it may have done more damage in the long term it gave ASD the limelight for a little while. Though awareness is nothing if the information is faulty. So I guess at the end of it all I'm cut pretty evenly on this one. I think I'll just reserve judgement, after all when every person with autism is so different how can there really be a true and wholly accurate display in media.

Monday, May 27, 2013

The Verdict is In

      If you aren't a regular reader, I'll fill you in quickly on what's been going on developmentally with Xander. In the last 6 months or so, we have seen a real increase in both positive and negative behaviors. He is starting to talk and ask for things (with prompting) more than ever before, which is a huge win! He's always slowly taking on activities others want to do without so much of a fight and devoting more time to things like reading a book or doing a puzzle.

     He has however had some negative new things arise. With better vocalization has come this God awful scream he uses whenever he's too happy/sad/excited/annoyed etc to express himself. He's always taken to repeating himself or others like a broken tape recorder. Without the tv, his visual stims have increased and have caused more than one public display. All of these and more were things we discussed with his developmental pediatrician and BSC, who both felt he was showing more signs towards Autism over PDD-Nos now that he was getting older. As far as his DP was concerned she had already labeled him with Autism in her paperwork but his formal diagnosis could only be changed by his psychologist.

     The benefit to a change in diagnosis would be the options for preschool specialized classes would be greater. We could check out the autism class AND the developmentally delayed classes and make the best choice for Xander rather than have no choice in the matter other than going the private class route.

    Earlier this month, we had the visit with the psychologist and with the help of our BSC we covered all the bases, detailing all the changes in the last few months. We talked a bit about the changes happening this month with the new version of the DSM-V and how that might affect Xander but he informed us that their company as of right now was going to stick to the old test criteria until farther notice. He was surprised to hear that the woman for the intermediate unit told us that with his PDD-Nos diagnosis Xander couldn't get into the autism class, he advised us to fight like hell if that seemed like the right class for him, but made a point to say that it might be a moot point after he was done going over the results of the interview.

    Two very long weeks later, the eval write up showed up in the mail. And it seems it is going to be a moot point because he has been changed to autistic disorder (PDD).

    Now please don't read this and assume that all we care about is getting a label and go off on me about how that shouldn't even matter to us, we are horrible for obsessing over a label, we are limiting him by even talking about it etc. (yeah that's happened before!) 

    We only care from an educational/funding/services point of view, plain and simple. We don't see him any different now than we did when he was born and love him more everyday with or without diagnoses and labels. If anything this has made us even more proud of our son; his determination, strength and brilliance amazes us daily! We have accepted and embraced the challenges we, as a family, will face in our future and this is simple a stepping stone to a more accurate way to help him get to his full potential. And we see no limit in sight for the amazing things he can achieve!

For more info on the differences between PDD-Nos, Autism and Asperger's, 
click the"Learn About ASD" Tab under the header and explore those sites!

Saturday, May 25, 2013

When in Need of Spoiling, Call Grandparents!

     Well this week has been surprisingly long yet all too short. My sister was here last weekend and my parents came for a quick visit the last few days. Now everyone is back home safely and I finally have time to share the pictures.
Even the robots had some autism awareness

     One of our new favorite day trip activities is to explore one of the many local museums. Thanks to Mr. Carnegie we have more than a few to chose from and they never disappoint! This time we went to check out the science center. Of course, it was hell to get to and I nearly gave up because of all the traffic from the rained out Pirates game but in the end we got there and had a blast. Before checking out the exhibits, we ran outside in the rain and snapped a quick picture with the museum's dinosaur statue for our hunt!

     We started in the train area and quickly moved on to the robot section. Xander loved the nearly endless amount flashing buttons but I started to get the feeling that if we did leave that area soon we may end up living there. What was my tip off? Oh when my toddler nearly hip-checked an elderly couple after spotting a small flashing button from across the room and hauling ass to get to it. So after breaking his little heart and leaving that section to check out what so on the next floor.

     This next area was all about coral reefs, currents and how similar fish and submarines are. All of which he was fascinated by! He spend a good half an hour running back and forth between tanks and displays checking and rechecking all of the fun things to see and touch. Luckily this floor was very low traffic and we were able to just sit on a bench and watch him run around like a maniac.

He even found Nemo!
    Since the museum was going to start closing and my mother insisted on a trip to the gift shop, we then wrestled a screaming Xander back into his stroller and made our way back downstairs. Within no time at all, Xander had picked out his "museum treat" (each trip he has gotten a plastic animal or dinosaur of some kind) and Grandma was holding up t-shirts trying to pick her favorite. A polar bear tee, dinosaur bean bag and plastic turtle later and we were off to meet Alex in Market Square for a late lunch.

    It was an exhausting, but wonderful trip and ended up making their short visit more memorable. Xander caught on quick to the idea that if you want something, simply ask grandma or grandpa and they were all too happy to oblige him of his nearly every whim, including playing outside in the rain and sleeping on top of grandpa all night. Sadly, their trip ended all too quickly but it won't be long before our summer vacation to the shore in August!

Sunday, May 19, 2013

A Short but Fun Weekend

     We are lucky enough to have always lived in beautiful places. I was born and raised on a barrier island in southern New Jersey, we later moved to the "mainland," about 500 ft from the bay and marsh. And now we live surrounded by amazing tree covered hills with mountains and rivers near by.

     Like nearly every other little boy his age, Xander loves being outside. That wasn't always the case though, and it took us so long to get him to tolerate grass even while wearing long pants and shoes. Now he has no problem running around bare footed in tall wet muddy grass! As much as he loves grass now, his favorite part of nature is WATER! He loves playing in puddles, small streams, lakes and the ocean during vacations back home. So this weekend while my sister was visiting we decided to take a trip to a lovely spot we hadn't been to since falling in love with western PA and moving here, nearly two summers ago. Normally I don't post 90% photos but they tell the story better than I could.
11 month old Xander playing on the rocks

My sister, Nicole posing for a shot in the middle of the river


My attempt to take a picture under the waterfall ended
 with me falling into the water and getting soaked

Here are a few shots from the night before when Nikki, Xander and I went to the park for a quick play time.

We made some really great shirts for the autism walk but sadly were unable to go this year. But you can never have too many awareness shirts. used the method from this post tutorial

Sadly, due to work issues, Nicole had to cut her trip in half and head home before we could get a good dinosaur hunt in but with an unscheduled trip to the city on the books for tomorrow to see Xander's developmental ped about the screaming issue and my parents visiting at the end of the week, I'm sure we will have some to add to the page soon!!

Wednesday, May 15, 2013

In Case of Emergency, Please Call

     I don't know if there has been a steady rise in news stories covering autistic adults and children wandering away or if I'm just noticing it more now that it hits closer to home. Either way, there's nothing that turns an Autism mom's blood cold faster than hearing about another child being found dead because they weren't found in time. The recent case of Mikaela Lynch, the 9 year old girl from California who went missing on mother's day and was found dead today, really puts it in perspective for you.

     Any kid can wander off. I know I did. I remember feeling the terror when I walked off, more than once, in a big department store and with each aisle my anxiety grew ask I called for my parents. In my mind, I was "lost" for much longer than I really was and all along my mother knew I was just over an aisle, all of ten feet away. Granted I shouldn't have walked off and my mom probably panicked and got mad the first few times but it was a "mostly locals" type of area we lived in and my other two siblings were always with me. So more or less I was in very little danger. But in that same scenario take away my voice, make me afraid of even friendly help and diminish my ability to understand language and add in sensory issues any store or outdoor surroundings might offer and we might be scratching the surface of what its like for a autistic child to get lost.

     I wrote recently of my own mini heart attack in the post Those Who Wander Aren't Always Lost, Sometimes They're Toddlers. So in the smallest microscopic way I know a second of this woman's terror. And as much as I agree with people who comment along the lines of "where were the parents? why was this child left in the yard with just her brother?" I can't help but ignore them because they have no idea what they are talking about. They don't know if the mother was outside with them (some report say she was) or if she slipped in for a second, turned her back etc. They could have a fenced in yard and she might have assumed they would be fine like all of the afternoons they had played before that one. Of course, we now know that assumption was wrong and sadly she has gone on to a better place but to suggest her parents didn't love her, want her anymore or she is better off dead, as some commenters did, disgusts me.

     Last night in the car, as we drove home from the city, Alex and I were discussing this Sunday's Walk for Autism in our local area. We have tried and failed miserable to get Xander to wear his I.D. bracelet and its a source of anxiety for us seeing as he is just now starting to respond to his name half the time during the come-when-called part of his daily sessions. But even then who wouldn't come running when they know they get a hug and a chocolate chip each time! So we were brainstorming ideas on what to do as far as a form of id goes. We had seen temporary tattoos a while back but there's no time to order them and get them in time for Sunday, but its a great idea if we had looked into it sooner. Half jokingly, my husband said hold him down and grab a sharpie. And at the moment, that's the plan. His name and my phone number will likely be written somewhere on his arm or leg in big sharpied letters just in case he somehow slips away. To be honest, if my son ever got lost, I'd want it to be at an autism event. At least the parents would all know exactly how to handle the situation and it would be as close to a judgement free environment as possible. Though I could go a thousand years without "misplacing" my child so the location for most comfort in that situation is moot. My prayers go out the family and others like them. I can't even imagine, nor do I want to.

    Hug your kids tonight and watch them extra close.

Monday, May 13, 2013

Just A Quick Update

     I think this is one of the longest stretches I've gone without posting since starting the blog and that's mostly because while not a lot is happening, we are super busy. I'm hoping that I'm able to get this post done before the house is completely destroyed again by Hurricane Xander.

     So this past week we had our wraparound services evaluation with his psychologist and hope to hear sometime in this week whether his diagnosis will be formally changed to Autism and how that will affect his schooling. Overall the appointment went surprisingly well; Xander wasn't an angel which is always helpful when you are trying to get an honest assessment.
My mom with
my nephew

     In other news, we have started the dreaded SPRING CLEANING! (Well for the most part, completed the cleaning, just a few minor things still left.) There's nothing more miserable that giving your house a deep clean and suffering for days because of all the dust you sucked in, but it feels amazing when everything looks so nice!

     Which leads me to my next topic: VISITORS!!! I love when family comes to visit! We haven't see anyone since January,
Aunt Nikki
so it will be nice to get some time to hang out. My sister, "Aunt Nikki" to Xander, will be our first guest for a week starting Thursday and once she leaves my parents, "Grandma" & "Grandpa," will be here for a few days. Bean will be on cloud 9. He adores having room mates for the sole purpose that he loves the constant attention. When he doesn't want to sleep at night or wakes up the second the sun is up, no one complains when he curls up in bed with them or insists on an early morning tickle fight. This will also be one of the first times my family has come for a visit when I'm not about to go into surgery and its not below freezing out. We will most definitely have some dinosaurs shots to add to our ever expanding list from Our Great Dinosaur Hunt!
Grandpa & Bean

    One of my favorite days of the year just came and went. That's right: Mother's Day! I love buying all the wonderful ladies in our families cards and hopefully brightening up their day! My boys spoiled me this year, I got a lovely breakfast made for me, and as far as gifts: A mocha latte, 2 sets of Dalek (Doctor Who villain/misunderstood genius race) socks, a manicure kit and a 3 pack of my super-hard-to-find lip balm. After a wonderful afternoon of getting to play a video game while Alex chased after the munchkin then a tasty dinner made by my handsome personal chef, I'd give the day a sold 5 stars! ***** I must give them credit, my guys know how to spoil me when it comes to holidays. Don't get me started on my gifts two Christmases ago, your spouse will never live it down that they weren't that good!

     "We" (the blog) had our first giveaway over on our facebook page. I had gotten my hands on one of those surprise inside candles, where there's a piece of jewelry at the bottom that  could be worth anywhere from a 100$ to 5,000$. Instead of only enjoying the piece once in a blue moon the rare times I take off my engraved Tiffany's silver bean necklace, I thought it would make a lovely mother's day giveaway prize. We gained a lot of new friends and fans on our facebook page because of it and if that's why you are currently reading this, than I thank you and welcome you to keep coming back for more posts about our lives and how ASD mixes in. I think this giveaway was a huge success and I look forward to doing another one down the road! So if you haven't liked our facebook page, check it so you don't miss it!!

     So while it hasn't been incredibly eventful and blog worth the last week has been slightly hectic and will probably continue to be until after our guests depart. But I'm not complaining, I enjoy when we are on the go and having fun together.

Sunday, May 5, 2013

Be Nerdy, My Son!

     I've said before in my bio related posts that my husband and I are nerdy. Not necessarily the "sexy" nerdy
we are still learning safe
sonic handling
that is all the rage currently, more like the geeky that still embarrasses my siblings and friends when I go on rants or whenever my phone rings. That being said, my dream is to someday go to a convention. How is this related to autism you ask? Bear with me, I'm getting there.

     A few days ago, during a con interview, Wil Wheaton (for all of those who don't know him and are too lazy/unable to click the link. He is one of the stars of Star Trek Next Gen. from back in the 80's and tons of roles in random geeky things since) was asked to explain "why being a nerd is awesome" for a newborn little girl to watch when she's older. Watch the video below of his answer then I think you will get where I'm going here with the autism/parenting/raising awesome adults connection.

in case you can't view the video, here's a link to a photo someone made writing up his answer.

     First off this is wonderful advice for anyone's kid, but considering autism helps our kids love stuff with a whole new kind of intensity and to the point that they might get mocked, it rings even more true. Xander knows how to love better than most adults, in my opinion, and I hope that its a trait that sticks with him for the rest of his life. It thrills me that his interests, even at such a young age, captive him so much. He will pour over books well above the learning level he's supposed to be at, (let alone the one he's currently in) taking in all of the bright realistic pictures, chattering about God only knows and comparing one drawing with the next. 

    I love that Wesley... I mean Wil Wheaton, not only encourages his own kids, but other's also, to be who they are and love deeply what they find interesting. I look forward to the days when Xander will share with me all the amazing facts he's learned in his dinosaur books and what he thinks really happened to them in the end, but until those days come I'll just keep encouraging and nurture his interests and agree to share every adventure we have with a 3" green plastic apatosaurus. 

Friday, May 3, 2013

Oh! That's just Stimtastic! a.k.a. Our Life Without TV

(stim╦łtastik) adjective 
1. used to describe a noun that will likely be used for some form of needed sensory input. 2. used to describe a noun, in a negative manner, that will more than likely overstimulate a person senses and lead to "space out" or "meltdown." example: The rainbow kaleidoscope wind chimes are simply stimtastic, let's avoid Xander seeing them so we do not cause an overload. 

      This is a word that I've created more by accident than anything else. I should also point out that my husband hates it. But with nearly endless threats throughout our day, I had to find a way to put a positive spin on an otherwise annoying issue. Sometimes being stimtastic isn't a bad thing, but more often than not I'm referring to something that just needs to be avoided or we end up with space cadet Xander or worse: a meltdown. True, uncorrupted meltdowns are rare for us right now but that's mainly because most of his sensory problems hit their boiling point when he doesn't get his way or can't understand why certain things are happening. We will notice he's been in a snippy mood for a few hours getting increasingly worse, then have him snap when pushed during therapy, only to find out that he's been going crazy over a tag in his shirt or a light in the window.

     We have noticed a real increase in this since stopping all tv/ipad usage. He will now visual stim off just about anything. He's discovered that when hanging upside down, the kitchen chandelier is really cool. Outside his favorite pastime is staring at and "talking" about the tree around the house. They seem to shimmer in the sunlight and rustle in the wind and he can't get enough of it. He's also now very fond of the textured walls of our apartment, at any given time of day, sunlight will hit one of the walls or ceiling and make the gloss paint shine, at which point he cracks up laughing. Even sunlight off the cars in the driveway can get him giggling; he likes to jump on his trampoline while watching the sun out the front door, double input!

     We've also noticed another "side effect" of no tv: he's yelling! Not everything he says is at an elevated volume, that I could handle. Nope, he's periodically screaming for no reason. We have found absolutely no rhyme or reason to why he does it, it can happen when he's happy, indifferent or upset. Our theory is that its just a form of input, that it feels good vibrating in his ears. Needless to say, it doesn't feel good to ours and I find myself with a headache nearly every night by the time he goes to bed. But oddly enough, we have found that super loud noise affect him even less than before. Xander normally won't bat an eye at a intense thunderstorm, even if its right overhead and the sound shakes the house. But now, as if it was even possible, he cares even less. More than just loud trucks and alarms, driving on the highway with the windows down put him to sleep! The noise it was almost too much for me to handle, if we hadn't been low on gas and 80 degrees, I wouldn't have tolerated it, but he could fall asleep to it?! He has a white noise maker as a baby and it took us forever to break his dependence on it but I was stunned at his ability to not just tolerate but enjoy it.

     I'm not about to bring back tv just because of these hiccups but I do long for the days when he will be able to understand and hopefully deal with the idea that it's one show and done. Until then its nothing or as little as possible, considering school is coming in the fall and digital devices are being used more and more.

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