Nope…not a ghost

I *finally* got smart and found an android app for blogging! <hits forehead> Duh…

Anyhow, I’m here…quick update summary and more catching up to follow:

* FINALLY found a new job and love it

* don’t like my manager so much

* still trying to catch up on bills etc

* Trace is having medication issues (add/adhd combined inattentive-hyperactive type) as in, they don’t seem to be working as well

* Landon is 4 yrs old now…some behavior issues but most likely nothing not typical for his age…speech is improving by leaps and bounds!

I *think* everything else is status quo….

*Love* my new blogging app!!

Location : 800-898 Tepee Dr, Independence, MO 64056,

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Too much, Not enough…..

Yes, it’s been a long while since I’ve posted. Honestly, I’ve just got so much …. stuff…. going thru my head that I don’t even know which way is up sometimes. Between IEP’s and IEE’s and speech therapy for Landon and trying to find a job….well, ready to pull my hair would be putting it lightly.

The IEE (independent educational evaluation) is done. The dr was fantastic, did a very thorough job and was right on the money about Trace. Aspergers is confirmed, ADD/ADHD combined type, dysgraphia and dyscalculia…everything that we already knew, plus a couple of new ones (dysgraphia and dyscalculia).

The scores on the tests done by the district as compared to the dr’s scores….extreme differences. On the Woodcock Johnson III, from the dr’s evaluations: on the Written Expression, Writing Fluency and Writing Samples, he scored as well as 1% of his peers. 1% !?! Math Fluency was less than 4%. Broad Written Language less than 6%. Including the ones I just listed, he scored under 50% on *11* of the tests….only 5 tests scored above 50%. On these percentile scores, 50% is pretty much average…anything below 50%, less than average, anything above 50%, above average. With the school’s evaluation, the count was exactly the opposite… 5 tests were below 50%, 11 above…go figure. On the Wechsler Intelligence Scale there were such drastic differences that I wondered if they’d even tested the same child!!! His full scale IQ had a 23 point difference….that’s huge. Also, something that I didn’t know at the time but was later noted and confirmed by several people (including our family psychologist who’s been in practice 40+ years) …when the school did the WISC with Trace….on 9 of the subtests administered, he scored exactly the same score….exactly the same. Our family psychologist said that in all his years of practice, he’s never seen that happen on one child’s test. Again, the differences between what the school scored and what the IEE psychologist found, drastic differences. Just as an example….. on the Comprehension subtest, the school scored him at 75%, the IEE found him at 9% – from above average to doing no better than 9% of his peers?!? Another drastic example, on the Letter Number Sequencing subtest…school scored (another) 75%, while the IEE found him to be at 0.4%.

Anyhow, we had our IEP meeting last Thursday. 2 hrs it lasted and….for the most part, it was a complete waste of time. The school part of team, when I brought up his low % scores on the IEE, says “oh, he was probably just having a bad day.” or “You know, his testing was done after school, when his medication had worn off. He was probably fatigued.” I can understand that he could be a bit tired after school….however, that being said, several things immediately come to mind- 1) the IEE psychologist would NOT have continued testing if she didn’t think he’d been up to it. She would have rescheduled. and 2) even if he *was* fatigued, the differences in the scores would NOT have been that drastic, a few % points, sure……the ones that I put up above…not even maybe.

On the plus side, he will continue with 60 minutes of speech therapy per week, and 30 minutes of occupational therapy per week (plus in the regular ed classroom guidance and redirection assistance). On the negative side….really nothing else was addressed, or was brushed off if I brought it up.

Why does this have to be so difficult? Why do we parents have to fight so damned hard for something that shouldn’t have to be fought for at all? And, what about the parents that don’t have the resources that we’ve been blessed enough to have? A wonderful family psychologist, an awesome mentor/advocate, supportive family….all this, and we’re still having issues. Parents that don’t have any of that, what chance do their kids have if the schools try to shirk their jobs?

I’m too tired and too stressed to even try typing anymore tonight….I can’t wrap my brain around even 1/4 of this stuff, much less 100% of it which is what my boy needs from me.

Hallelujah, there *is* a bit of peace at our home!!

First…..seriously Mother Nature? December 23rd and all you got for us is a thunderstorm, complete with lightening? *shrug* I know there’s a snowstorm headed our way and the newspeople are all “Yippee!! It’s gonna be a white Christmas!!” but, I won’t believe it til it’s on the ground…jus’ sayin’….

Second….I may have mentioned a few times (like, eleventy thousand times!!) that Landon has/is a bit of a behavior challenge for us. And, I may have *mentioned* to his pediatrician more than a few times the same challenges. At his last visit, I mentioned it yet again and she told me about a book called “Love and Logic Magic for Early Childhood-Practical Parenting from Birth to Six Years”. I was skeptical to say the least, the very least. But, I put it on hold at the library and got the news it was ready for pick up this past Monday. I got it, I started reading it, I scoffed thru about the first quarter of it thinking to myself “There is NO way this is going to work on Landon, no way.” But, I kept reading and…a funny thing happened. It actually made sense, it seemed that it just might be plausible that it would work. Sooooo….I took some of the principles and gave them a whirl. Y’all? Hallelujah, amen and praise the Lord, there’s been peace in our house for the last 2 days at least 90% of time!! (At this very moment however, we’re experiencing part of the other 10% of time….oy!).

The principles behind the concept are very basic and, well, logical, to be honest. Build the self-concept, share control/decision-making, offer empathy *then* consequences and lastly, share the thinking and problem-solving. I’ll be the first to admit….the 2nd concept of sharing control/decision-making had me shaking my head, I just knew it wasn’t going to work. But, apparently, the key is offering only 2 choices (making sure you’re ok with either one being chosen) and in 10 seconds flat if they haven’t made a choice, make it for them. We tried that…and it worked. Yeah, I know, crazy right? I was brave and tried another tactic…we used the “Uh-oh” song. Yup, the “Uh-oh” song…when he started to misbehave, I would say in a “sing-song” voice “Uh-oh….looks like we need to spend a little quiet time in our room” and took him back to his room and told him quietly and simply “When you’re done, you can come out”, closed the door and walked down the hall. I stayed close, just to make sure it was all ok. After about 3 minutes or so, he came out, wiped his eyes and said “I ready now”. I smiled at him, gave him a hug and kiss and went about our day. The authors say it’s important to *not* rehash what happened that caused the “quiet time”. Rinse and repeat as necessary. Do you know, after two times, we didn’t have any more quiet times yesterday? And, only one today and it was more about being tired and having time to “collect” himself. I was thrilled to pieces by bedtime last night, thrilled!

This morning the boys unwittingly provided me with a chance to combine several things from the book…and IT WORKED! I had errands to do this morning, I gave them a choice-“you can come with me or you can go to Dan and Deb’s”. They chose to go with me. I told them that was fine but that for this to happen they needed to 1) be nice to each other and 2) listen to me while we were getting ready. Started out good, Landon put his own clothes on, Trace too….they brushed their teeth, and then I offered 2 choices for breakfast. Trace immediately started in about not wanting either choice and then Landon started in, and Trace took off stomping down the hall. He stopped at his door, looked back at me and said something smart-alecky….I just shook my head at him and said in a sad voice, “Wow, this is a bummer dude. I’m not sure what I’m going to do about your behavior right now but, I’ll think on it for a while and let you know. Try not to think about it.” Can I tell you now that I *love* the phrase “Try not to think about it.” ?? LOL…he was immediately asking what are you going to do etc etc. I just shook my head sadly and told him that I wasn’t sure yet. “Love and Logic” calls this a delayed consequence. Normally it’s used in situations where an immediate consequence isn’t feasible or the behavior so out of line you need time to think of something. I used it cuz I didn’t know what to do! LOL. Thumbed thru the book and found the perfect consequence. I took them to Dan and Deb’s house. Once there, I got the boys in front of Dan and Deb and laid out the following: “Guys, I was really disappointed this morning with your behavior. I need to know that when we’re out running errands that you’re going to be nice and behave for me. Since you couldn’t do that today, Dan and Deb are going to watch you while I run errands. They are going to charge you $1/hr if you’re nice to each other and behave. It’s $3/hr if you don’t behave and be nice. So, how are you going to pay them?” LOL, Trace’s eyebrows shot up his forehead and he blurted out “But I don’t have any $$” and Landon mimiced him. I said “that’s ok, I can pay them for you.” of course there was “yay, thanks mom!” and then I added in, “and you can pay me back. For $1/hr you only have to do a few chores for me. But, for $3/hr it’s chores, *plus* one favorite book and one favorite toy.” They looked concerned and a bit bewildered but said “Ok”.

I ran my errands, picked them up to the chorus of “Mom! We were good!! We were good!!” and we went home where they each did a chore for me and went about the afternoon. They’re both very tired this evening so it’s been a challenge and they’ve both visited their rooms for “quiet time”, but overall, it’s been good. I think I’m going to keep doing this…..and try and tweak some things to be specific to them but I have hope!!

Off to Work I Go…..

Yup, it’s true. As of Monday I will be rejoining the working world. It’s only a temproary position, probably until mid January, with a commodities trading company. I will be so far out of my element as far as the type of services they provide, but good to go for the work that I specifically will be doing.

Only, I’m not excited about it. I mean, I’m thankful, because we need the funds (altho, it’s not alot, nowhere near what I *was* making) but, I’m kind of getting used to the whole gig. I like getting Trace up in the mornings and off to school, I like watching ‘toons with Landon on KCPT… (shout-out to KCPT though? Seriously need some new episodes of Super Why…Landon knows every one of them we’ve seen this week!)….I like running errands and spending time writing and taking Landon to speech therapy. Trace, well, he’s not taking it well…he’s sad and upset because he really likes the bus he is riding now, he’s got people to talk to and he’s finally *comfortable* with it. And now, I’m changing all that. Temporarily, but still. And, he even told me that he likes me being here in the mornings and when he gets home in the afternoons….that’s a big thing for him to admit.I give him all the credit in the world though, he’s trying very hard to realize that this is something that has to happen. Landon, predictably, is thrilled to pieces that I’m going back to work because that means he gets to spend his days with Uncle Danny and Debi again, lol…I’m good with that-very thankful that we have someone to care for the boys that we trust implicitly with them. When I called Uncle Danny to let him know that I’m going back to work next week, first thing out of his mouth was “Do I get first dibs on watching Landon??” LOL…..needless to say, that part of it is a no worries aspect.

Trace goes tomorrow evening for his first round of testing for the Independent Educational Evaluation. Should be interesting….I’m not sure exactly what to expect other than it’s a 2 hr appointment. More on that later….

Lots of things….

Once again, life has been happening at breakneck speed and blogging fell to the wayside. Time to catch up.

To start, one teeny-tiny little tidbit I forgot to mention when I last posted… I lost my job. Well, technically…*I* didn’t lose it, it lost me. They eliminated my position…I went in to work one morning, just a normal workday morning and 45 minutes later, my desk was packed and I was walked to my car. I felt like I’d done something wrong, something criminal the way I was escorted out and I was watched over while packing up my desk. I understand the reasoning behind it, but that doesn’t change how it makes you feel. So. There, that’s out. I’ve been looking for something new, but like millions of others in this nation of ours, it just isn’t happening. I’m either not qualified enough, or I’m over-qualified. That last one is a crock but, there’s not anything I can do about it.

Yesterday, we discovered that Randy’s work van had been broken into. That’s the 2nd time in the last 6 months….we don’t live in a “bad” neighborhood by any means…it’s a decent, middle income place. However, a few streets over are low income duplexes, full of punk ass teens who apparently needed a quick drug fix. Or something. Randy was off for 5 days over the holiday and using some PTO time so he hadn’t been in his van since last Wednesday night. He went out yesterday afternoon so he could repair something and discovered-and this is good, very inventive- that the punks had cut the rubber around the drivers side small wing window and taken the whole damn wing window out. Matter of fact, they took the fricking window itself…along with the new GPS unit (which was hidden in the glove box), a small heater, a “back up” camera and the LCD screen that went with it (so the guys can watch what they’re backing up to and not run into buildings) and some various tools. The thing is…this was no quicky, smash ‘n grab job like last time. Like I said, they actually took the window out as opposed to smashing it, they had to unscrew the backup camera from the back top of the truck (above the tommy lift) and dismantle the LCD screen to make sure they didn’t damage it. And, it had to of been done in broad daylight. We put up a bright ass motion sensor security light after the first time his van was broken into-it’s right outside our bedroom window and wakes us up if it comes on, also visible from the living room (thru the backdoor that goes onto the deck). So, that leaves daytime….again. Just like the first time. There were actually prints on the window this time so they dusted the window and the doors, above the tommy lift etc….not expecting anything to come from it though. AND, because this has happened twice…the guys are not allowed to drive the work vans home anymore, for any reason. We live approximately an hour away from his workplace (therefore, the vans) so if he’s on call, he has to drive all the way to the depot and get a van, then go wherever the call is….in the mornings, even if the first call is 10 minutes from the house, still he’s got to go get a van and backtrack.

Not to mention what this is going to cost in gas money now. Admittedly, we’ve been spoiled in that we’ve only had to worry about gas for my car for the last 2 years. However, after figuring it out today….the amount he’ll be putting in his gas tank every month will be equivalent to what we were paying in child care when I was working. I can’t figure that we’ll be able to afford both….so, unless I get an evening job (which would still be difficult as he’s on call every other week) there’s no way we can think of at the moment where we’d be able to afford child care AND his gas costs…so, perhaps I’ll be staying home indefinitely? I don’t know….Any ideas anyone?

I could always go back to school. For the unemployed there is grant money set aside that can be used while you’re drawing unemployment. I know that alot of jobs that I am qualified to to do (without a degree) are now requiring a bachelors degree or something of that nature. Maybe I should go to school, get a degree so I can be “officially” qualified for the jobs that are out there? Hell, I don’t know… Any thoughts on that??

AND….because things just aren’t varied and busy enough…we requested and got permission for an independent educational evaluation at public expense for Trace. The district didn’t much like it but, then, I didn’t much care for the fact that they are wanting to discontinue his OT services and not address his adaptive behaviors at all. We had our initial assessment appt last night…two hours long, mostly us and the dr talking and then all of us plus Trace towards the end. We all, including Trace, really like Dr. O….she’s a really nice lady. Seems to be very thorough in her work and comes highly recommended. For the next 4-5 weeks, 2 hrs a week will be spent testing and evaluating Trace in all areas related to his disabilities. I think that we are going to be very pleased with her results, but I’m thinking the school won’t be so much. Which is a sad testimony to how far off track our schools have gotten. I know it’s not necessarily the schools, or the teachers (altho, in our case I’m not so certain about that)…but it’s the laws. State laws, and district procedures….they are supposed to follow IDEA 2004 guidelines, the state laws are supposed to ensure that, and the districts are supposed to implement it. But, who’s watching to make sure it’s done right? No one. There’s no checks ‘n balances …at least not in Missouri. Advisory panels aren’t compiled of the people they are supposed to be, parents are shot down all the time if they speak up at meetings…”that’s not the way we do things” ….Um, if federal law states it is the way you’re supposed to do things, then you’d damn well better be doing it. It’s absolutely ridiculous the way that schools and districts find loopholes to get away with things, or just blatantly ignore things. It’s an absolute shame. I thought that the schools are there to teach the children. Period. That the education comes first. Why is that not happening? When, and why, did it become about not wanting to be bothered with more paperwork, or more work in and of itself? About not putting the child’s needs first? I know that it’s not just state laws that are inefficient, but at the federal level too….when are they going to make it about the kids again?

As parents, we need to put a stop to the intimidation that goes on at IEP meetings when the district side of the team wants things their way. We have to speak up and advocate for our kids…no one else is going to do it. We have to work at changing the laws, at holding the lawmakers accountable to do their dang jobs.

Holy Cannoli!!!

This post will be short ‘n sweet…..then I can finish the one I’ve been trying to do for weeks, lol!!

I finally, *finally*, got a laptop! Yayyyzzzz!! It’s a Dell Latitude D505….I have no idea what that means, but it was a good deal. Add in a broadband card from my cell provider and I’m golden!

Now, I can start working on the articles and stories I want to write. I’ve done research at the library to find out what I need to do to get published in some of the regional parenting magazines- I am so damn excited!!!

Also, I will have the means to research and prepare for Trace’s IEP meetings and the IEE…I can work on an IEP blueprint which will be extremely helpful.

Never realized how much we depend on computers until you don’t have one at your fingertips ….

Got to work this morning only to find that the main system is experiencing “technical difficulties” LOL, so I can’t do any of my work that needs to be done. What better time to update than that, right?

I have something really awesome to share with you guys. I got to go to Trace’s horse therapy session Tuesday night (usually I don’t because I don’t get off work in time) and I actually SAW him RIDING A HORSE. OMG y’all…..I couldn’t be more proud, more excited! And Trace was excited about me being there and did a “trick” for me on the back of Big Red- he rotated in a complete circle on Red’s back by lifting his legs up and over and turning! *And* he accomplished it in 5 seconds….*5* seconds!!! He started his session by brushing the dirt from Red’s coat so he could put his riding blanket etc on him, after he finished that, he walked down to the barn (they were in the outside arena this time) and got the saddle blanket and padding, the stable halter and lead rope, his helmet and the girth strap and with help from the assistant in training, carried it all back to the outside arena. That, in and of itself, has the power to amaze me- getting everything in one trip (all the assistant did was help carry-he got everything picked out) was…well, let’s just say that taking his dirty laundry downstairs normally takes 2-3 trips-not because he has so much but because he only takes 3-4 items at a time, lol.

Anyhow, the title said pictures, so pictures it is!!!

Feels Like Starting Over….and Other Ramblings

We’re coming up on the new school year’s IEP meeting and I couldn’t be more nervous. New school year, new *school*, new teachers (as in 4 of them!), new classmates…new new new new!

I don’t want to rush into a judgement here but, I’ve gotten little vibes here and there that tell me that *this* IEP team may not be as easy to work with as last year’s. I think that to an extent they wonder exactly why does Trace have an IEP in place. Granted, he has made some incredible strides over the summer that have helped him to be a little more open socially, but there are still other issues and LD’s to contend with. I blogged before about the equine therapy he’s doing and I believe, thru the therapy, he’s becoming more confident in himself and his skills/talents. He’s reached out to a few boys in his class that his teacher refers to as his “crew”, lol, they eat lunch together and play at recess. I’m beyond thrilled that he’s come so far since last year when he walked the playground by himself, picking up rocks or trash or whatever else he found. Yet, at the same time, put him in a social setting outside of his “norm” and all of his Aspie quirks come out to play. He’s stretched out more shirt sleeves and shirt hems than I care to count…he get’s anxious/nervous and he’ll pull his sleeves down over his hands and twist and pull, same with the shirt hems.

Don’t even get me started on his sensory integration issues. Oh my word. The boys had to get haircuts Friday evening because they were having pictures taken the next day with grandma, so off we went. Trace has always been a little skittish about haircuts but not too bad, and Landon is just fine as long as you don’t try and wash his hair. But, Friday night? Holy moly, Trace was off the charts skittish…he shied away from the clippers (the sound *and* feel of them) and when the lady tried scissor cutting, he would pull his head away every time she combed up a section to snip at. Bless her heart, she was very understanding and finished his cut and said it was no problem…sigh… Landon however, once he realized she was *not* going to wash his hair was just fine and sat perfectly still. Go figure.

Anyhow, back to what I started with on this entry. Nervous, anxious…I haz it. I’m almost treating it as if I’m starting the whole process from a blank slate. I’ve been scouring the interwebs looking for new information, finding some of the same information that I’ve already collected and reading it all again as if it were brand new to my eyes. Thankfully it’s been a reminder to me to stay on my toes with the teachers and IEP team members. I’m also learning about certain assessments and testing that I can request that have no been done but probably should be….and I’m learning how to make these requests as an advocate, not just a parent.

Which leads me to my final thought in today’s entry. Over the last few months, as I started my research anew, I decided that I want to write. Not a book, no….more like articles/papers, regarding ASD’s, Aspergers’, advocacy, experiences we’ve had….a whole variety of things. To accomplish that efficiently, we need a computer at home…specifically, I’d need to get a laptop or netbook etc. Does anyone here have a preference or referral? I need to be able to do word processing, interwebs browsing, some pictures….oh, and it needsto be cheap. Right now, we can’t justify the purchase (what with speech therapy and equine therapy etc etc)and, as much as I dislike doing so, we’re going to have to put it off until we can save for it.

So, opinions guys? Pretty please? =)

An award?? Really?!? Squeeeeee!!!

LOL….sorry for the squeeing, I never expected to win any kind of blogging award! I need to apologize first and foremost for taking so long to respond to this!

Laura, I’m humbled and thrilled that you thought of me, thank you! You all need to check her out at iamtheglue I think you’re quite an amazing person….what with having a newly dx’d kiddo on the spectrum (and plunging head-first into all the reading and researching and googling that goes with it) and spear-heading the pilot Autism Ambassadors group for Derek’s school; you also work a FT job that has been stressing you out, suffer physical pains every single day…. you ALSO are an incredible mom to *7* children (shoot me now, gah….I don’t know how you do it!). I am tired just *typing* all those things out….and I’m quite sure I didn’t hit everything (like, oh, I don’t know…cleaning the house? Taking care of hubby? Doing laundry? Etc etc).

Now! It is my turn and here are the rules…
• You must thank the person who has given you the award.
• Copy the logo and place it on your blog.
• Link to the person who has nominated you for the award.
• Name 7 things about yourself that people might find interesting.
• Nominate 7 other Kreativ Bloggers.
• Post links to the 7 blogs you nominate.
• Leave a comment on each of the blogs to let them know they have been nominated.

Seven things about me that are interesting…well, at least seven things about me, lol

1. I crochet to help relieve stress and unwind.
2. I love love love reading!
3. I volunteer with a dog rescue, breed specific Small Paws
4. I absolutely loathe doing laundry
5. I have a secret obsession- I love Kid Rock’s music!
6. I am awful at Mafia Wars on Facebook.
7. I have enough yarn that my husband says I should open my own yarn shop

Seven amazing bloggers that I want everyone of you to go and visit-

Amalah
I don’t remember exactly when or how I came across Amy’s blog, but I *can* tell you that it’s been a mainstay on my list of “must-read” blogs, lol. She is incredibly gifted -She’s funny and serious, snarky and sympathetic, all the while not afraid to say it like it is. She’s got 2 gorgeous boys and shares pictures of them all the time. She’s fun to read, she can (and will at any given time) make you laugh, cry and/or say “Exactly!” or “Whoa, been there, done that-not fun”. I’ma shut up now, go read Ms. Amy!

Yarn-A-Go-Go
Rachel is a truly remarkable woman. She’s a knitter (which is how I got “hooked” on her blog-sorry, couldn’t resist the pun!), she’s a writer (her first book comes out April of 2010…watch for it!) and lives in sunny California. She’s got mad skillz in her knitting (she makes gorgeous sweaters), and her writing is fantastic.

The Kerrie Show
What to say about Kerri….wow. What *not* to say? Kerrie and I go waayyyy back, lol, clear back to high school (20 yrs this year! YIKES!). We recently reconnected thru Facebook and I’ve been reading her blog since! She’s an awesome homeschooling mom of 4, with another on the way! She’s also a writer, she’s got an e-book out there, as well as lots of parenting articles!

Motherhood (Oh, And Everything In Between)
I just recently started reading Danielle’s blog after “meeting” her (online) thru a mutual friend we have. She took the time to indulge me in a question re: special needs kids and teachers. Danielle is a stay-at-home mom of 3, 2 boys and 1 girl. Her blogs run the gamut of topics….I especially love reading about the antics of her kiddos!

Mariposa Farm Alpacas
Have you ever seen an Alpaca?? The owner of this blog is my cousin Deborah, we grew up spending parts of our summers together and I love her to pieces! She’s an alpaca owner as well as a research scientist; she dances (and teaches dance), she sings and volunteers at her local zoo, she “tweets” and is active on Facebook as well. I don’t know that there’s anything that she *doesn’t* do, lol. Give her a read, check out her Alpacas!

Fiona’s Blog
Ahhhh….Fiona. Fiona is the daughter of another cousin of mine (Hi Aimee!). There’s not tons of writing on Fi’s blog, but whenever you need a “pick-me-up” you will always find beautiful pictures of Miss Fi! Her mama,Aimee, is also my cousin Deborah’s sister- keepin’ it in the family 😉

My Life with Aspergers
This is a blog that I’ve learned so much from. The keeper of this blog is John Elder Robison- also author of “Look Me In The Eye: My Life With Asperger’s”. I’ve only recently started reading it, going back to the beginning, and it’s helped me to understand so much about Aspergers. His blogs have taught me how to look at situations from the POV of someone who has Aspergers and challenges me to search out alternative solutions that I encounter with my oldest.

Holy Moly…. I am truly tapped out right now! I hope you all enjoy the blogs that I’ve linked too 🙂

Being blessed by Aspergers

The Gift of Aspergers Syndrome

I normally don’t pay much attention to movie reviews. However, with the movie “Adam” coming out, I’ve been reading some of them here and there, eager to see what others think of the disorder that I deal with daily in my almost 11 yr old son. And then I read this review of the movie by Mr. Rex Reed.

http://www.observer.com/2009/movies/hugh-dancy-his-way-superstardom

I honestly didn’t think my dropped jaw would be able to make it back up from the floor. I was shocked, upset, indignant, sad….goodness I can’t even begin to list all the things that went through my mind. But the one thing that stuck there after reading it was……people are going to read this and get completely wrong ideas about people with Asperger’s Syndrome, they will think that Mr. Reed knows what he’s talking about…but, outside his circle of two Aspies, he clearly, *very* clearly, doesn’t.

This is the paragraph that I wished he would have researched before he’d written it; talked to doctors, psychologists, psychiatrists….even….I know it’s a stretch here but….maybe even talked with some Aspies (besides the two he knows)? Hugh Dancy, who portrays Adam (and does so very well), will tell you “no two persons with Aspergers are the same”….

Far from just another exotic Disease of the Week, Asperger’s is an incurable neurological disorder similar to autism that turns outwardly normal-looking people into high-class idiot savants. I know at least two people with Asperger’s. They are incapable of thinking of anyone or anything outside of themselves. Challenged by social interactions and given to obsessive routines that revolve around a single subject of interest, they do not like to be touched, they feel incapable of explaining things and they cannot cope with people in general. Emotionally blocked, they say things that hurt and sting without meaning to be rude, and are weak at understanding, receiving or exchanging the emotions of others. They cannot look you in the eye. Adam is a fascinating study of a rare affliction in which all of these qualities are evident, in carefully researched scenes that are humorous and touching. It is lethal to get involved romantically with any person with Asperger’s syndrome, since they care nothing about other people’s feelings, needs or priorities

I read that and just shake my head. Apparently he has had some bad experiences with the Aspies he knows. Unfortunately, there are people who will read his words and take it to mean that all Aspies are that way and that couldn’t be further from the truth. Perhaps the two that he knows (and I’m willing to bet he knows more and just doesn’t realize it) are exactly as he describes, but to paint all Aspies with the same brush does them a huge disservice.

Please know that I am writing this to be specific to Aspergers Syndrome (AS). I realize that while Autism and Aspergers are included on the same “spectrum” there is a world of difference between the two. I’m not an “expert” on either of them by any means…only on my own child who happens to have Aspergers.

To tell you what I mean by “spectrum” I’ve copied and pasted the following from the website of NINDS (National Institute of Neurological Disorders and Stroke):

AS is an autism spectrum disorder (ASD), one of a distinct group of neurological conditions characterized by a greater or lesser degree of impairment in language and communication skills, as well as repetitive or restrictive patterns of thought and behavior. Other ASDs include: classic autism, Rett syndrome, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS)

There are no two Aspies who are the same, there just isn’t. There are characteristics of the disorder which you will find in one Aspie, but not another. And characteristics that you find in one won’t even be a blip on the radar for another. Not to mention, the degrees of severity of the characteristics are different for each Aspie as well. My son Trace is almost 11 yrs old and he has Aspergers. However, he is not even remotely like the description that Mr. Reed gives us in his review. Trace is intelligent, yes (in the top 5% of his 4th grade class last year) but not a “high-class idiot savant”. He is a loving, sweet, funny and caring child…..especially with family. He has a few friends and their interests tend to run to the same activity which, right now, is Pokémon….especially the cards, but he also likes Transformers and Star Wars. He loves hugs and to be hugged, or sitting next to us or playing with his little brother. Trace has no problem explaining things….unless it’s something he doesn’t know and then he will ask. He is honest, almost painfully so…but, I’d rather he tells the truth than lie. And he is not emotionally blocked- he loves, he hurts, he cares. He will look you in the eye. To say that it is “lethal” to get romantically involved with an Aspie….well, it’s apparent that it’s written by someone who is misinformed about Aspergers and those who have it. Trace may have certain things to learn and issues to deal with so he can be in a successful relationship…but, you know what? That sounds pretty typical relationship to me….and with the right person, you work together to help the relationship survive.

Almost without exception, they leave you perplexed, riddled with doubt and totally depressed

Ah, the last sentence. Does Trace perplex us? Sure….but, show me a child/person (with a disability or without) that *doesn’t* perplex their parents/family/friends sometimes. I will admit to the “being riddled with doubt” point. I absolutely doubted myself when Trace was first diagnosed with Aspergers. I doubted that I could be the parent that I needed to be for him because…”hey, it took me (us) *10 yrs* to find out what was wrong with our son.” ….and “hey, there’s a TON of research that needs to be done and dr’s and specialists to find and therapies to research, and IEP’s to be fought for and teachers to talk to and the educating of family/friends/John Q Public and laws that need to be in place but aren’t so they need to lobbied for and more research to be done and advocating to do….and …and …. and….and….” Depressed, oh yes….even prone to panic attacks. I was overwhelmed with the diagnosis, by all the “things” that needed to be done, all the things that I need(ed) to learn.

But, see, one thing I’ve learned over the last year and three months is this. There will always be research to be done, advocating to be done, learning to do, laws that need changing or needing to be put in place. The medical community is learning more and more each day about Aspergers. They are learning about the causes and the things that will help our kids- so they can learn to cope, learn to be (at least somewhat) comfortable in social situations, and learn to recognize what emotion is playing across the face of the person they’re talking to. And as we learn more about this disorder, the less I doubt myself.

I realize now that while I may have “off” days (and who doesn’t?) I am totally and completely blessed with this child of mine. Yes, Trace will always have Asperger’s Syndrome, it *is* incurable (guess Mr. Reed did get one thing right), he will always be more than average intelligent. He will probably not ever be totally comfortable in social situations (but neither are a lot of people I know who are neurotypical or, NT’s) but will learn to be more so than he is now because we have researched and sought out the help that he needs. He has the ability to focus and learn everything there is to know about whatever subject/topic that has caught his attention…and as that is subject to change every year or so, I expect that he will learn so much more than the average person. He will always hug me and accept hugs from those that he cares about.

Most importantly, he is, and always will be, my quirky “Little Professor” who is intense in his focus on certain things, who pals around with his little brother, who won’t always get the idioms that we utter, who will read and re-read books that he loves, who may say something “politically incorrect” but still be 100% honest, who may always include an awkward little pat on the back when he hugs, who may not always express his emotions outwardly, or understand the emotions playing out in front of him, who probably won’t look you in the eye for more than 2 seconds at a time because it’s just “too much”, who may never take a picture where there is no light in his eyes and the smile isn’t forced, who will never (by his own admission “Mom, I don’t *do* spontaneous”) do anything spontaneously and will always get so intensely focused on his Nintendo DS game that he won’t hear you call his name when you’re right next to him….but he will always, without fail, tell me “I love you MORE” when I tell him that I love him.

You have no idea what it means to be gifted with Aspergers Syndrome.