This Life I Live

Nope...not a ghost

2010-07-15T21:21:00.001-05:00

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.....

2010-02-13T22:00:00.003-06:00

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!!

2009-12-23T18:05:00.001-06:00

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.....

2009-12-10T21:05:00.002-06:00

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....

2009-12-01T22:48:00.004-06:00

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!!!

2009-11-07T19:21:00.003-06:00

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 ....

2009-10-01T13:08:00.003-05:00

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

2009-09-28T14:03:00.004-05:00

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!!!

2009-09-17T12:02:00.007-05:00

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

2009-09-02T13:39:00.002-05:00

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.

Yeah, so wow...It's been, awhile hasn't it?

2009-09-02T13:07:00.002-05:00

What can I say? Life is busy....work is busier than life. It makes my head spin. But, I've found some new blogs to follow and I really just need to stop being lazy! I can post from my cell phone so really, no excuse.

A brief rundown.... Bubby started the 5th grade. It's in a different building that the elementary grades so we were afraid it would be a hard transition for him. Apparently not. At the back to school night 2 weeks ago, we were amazed at the things his teachers were telling us. You may (or may not) remember me talking about how at recess time Bubby would walk around the playground, picking up rocks or junk or trash, all by himself because he didn't know how to approach the other kids to ask to play. This year, 2 weeks into it, and he's got 2-3 boys that he plays with at recess (!!!) and sits with at lunch (!!!!) and in general, calls "his buds". Be still my heart. I never, ever, thought I'd hear this about him. Don't misunderstand me, he's still my Aspie (and always will be, there's no "cure" for AS) but, in some situations, he apparently can feel comfortable enough to initiate contact with a couple of his peers. And though we can't prove it, we believe that the equine therapy he's been doing over the summer has played a large part in that. He's been doing a program called H.O.R.S.E. (Helping Others Reach Success and Excellence), you can visit them at www.horsehelpspeople.org and we've seen some changes in him, good ones. If you'd asked me at the beginning of summer if I thought this therapy would help, I probably would have been iffy with my response. But, he went from never having been around anything larger than a Rottweiler, to actually *RIDING* the horse just last week. Color me surprised. And ecstatic!

On to Lil Man....ahhh....Lil Man. He's 3 and a half now, with an attitude of a hormonal teenager. One minute he's giving us kisses and in the next breath screaming at us for something. Or from sitting quietly next to the dog, and the next smacking them...he's gotten himself snapped at recently for doing just that. He's talking up a storm....though you can only understand about half of it. Speech therapy will be starting in the next few weeks (thru the school district's early childhood center)...he's excited about going to "school". I'm beginning to see early signs of ....well, *something*....and probably something on the spectrum, I just don't know what....it'll show itself eventually and we'll deal with it then I suppose.

A few weeks ago, I wrote a paper (an essay? a letter??) on Aspergers. It was mainly in response to a poor review of the movie, "Adam". Hugh Dancy is the titular character, a 20-something man with Aspergers who falls for his new neighbor (played by Rose Byrne). The movie had, up to that point when I read this one review, gotten nothing but glowing reviews and praise ....not only from NT's but from the ASD community-and at times, that can be hard to get. I'm going to share my "paper" with you in a new post shortly.

Hey, looky there....you get 2 posts in one d....wha? What do you mean that doesn't make up for all the unposted months?? Hmmph....fine. I'll post it anyways ;-)

Why does it have to be so difficult?

2009-03-30T09:23:00.002-05:00

So.....what do you do when your spouse doesn't GET the issues that your oldest child, who happens to be an Aspie, has??? I mean, c'mon....seriously. I *know* that it's been difficult to deal with....I *know* that it's hard to understand....but, damnit, we HAVE to deal with it correctly or there's going to be bigger issues down the road.

We got Bubby a Nerf "protecter" for his Nintendo DS....much needed, especially since Lil Man likes to grab things from your hands and throw them....down the steps. Yeah. So, got the protector, put it on the DS and after spending about 10 minutes with it on, Bubby wants to know can he take it off....he doesn't like the way it feels on his hands. Duh. It didn't even occur to me (us) that he may have sensory issues with it.....he's particular about what he feels on his skin....and he doesn't like "rough" feeling stuff-no one does but what's "rough" for him isn't necessarily rough for someone without sensory issues. So, when he came to us and asked if he could take the DS out of the protector as long as he wasn't up and walking around because it "feels funny" ....well, I didn't really think it was a big deal. But nope, Randy had a fit over it. And when I told him that it's likely a sensory issue and we should give him time to adjust to it. He said he (Bubby) needs to keep the damn DS in the protector and just adjust. *scoffs* Because it's just easy peasy pudding pie for Bubby to "adjust", right? He still doesn't like to feel a shirt's cuff seam on his wrist.....but now, about 5 yrs later, at least he's not still tearing holes in the sleeves so he doesn't have to wear them anymore. Or, what about the seams on socks? It's pretty dang hard to find seamless socks let me tell ya, but I do it because it just bugs him so much. Any kind of ribbed or textured shirt? Not getting worn by Bubby....it's either "itchy" or just plain ole "I don't like how it feels Mooooommmm". So, am I going to force him to use the protector all the time? Heck no......as long as he's sitting down I don't see that he needs to keep it in the protector.....but if he's up and about? Yes, he'll need to have it on.

Last week we had a pretty special night..... Thursday night they had an awards presentation at Bubby's school for kids who scored "Proficient" or "Advanced" in Communication Arts and Math. He got medals and certificates for "Proficiency" in both subjects! We are soooo PROUD of him! He told us after the presentation that he wants to get "Advanced" next year and I was like "Wow! He's got some high goals for himself" .....which he promptly shot down when he finished his announcement with "because the Advanced medals have way cooler pictures on them Mom!" LOL......

In other school news......Bubby has completed most of his IEP goals. One or two of them he's having issues with, but, his speech therapist/case manager says that she expected it because the curriculm is getting more difficult. He's still got all A's and B's on his report card so I'm pleased.....but, am accepting right now that the IEP will have to be redrafted for his move to 5th grade this fall. Hopefully I'm better able and equipped to deal with all the meetings and such this time around.....last time I was a nervous wreck and had major panic attacks. However, we'll be dealing with the same people-with the exception of his teacher of course- so I expect that it will be somewhat easier on me.

Now I'm off to dig up info to share with Randy about sensory issues and Aspergers and ADHD.....wheeeee!!

Out of the mouths of babes.....

2009-03-16T15:42:00.002-05:00

Bubby brought home a bunch of papers from school the other week and among them was a letter that he had written to Santa Claus back in December.... Keep in mind that he has Aspergers and Aspies tend to tell you exactly what they think/what's on their minds.....no social niceties here!

Dear Santa Claus:

I don't want anymore wars or crime sprees. Wars take people away. Crime steals, kills and multiplys (sic) each year. So, please stop wars! Stop crime!

It's for the army! It's for mugged people! Its for kids! It's for killed people! It's for missing/killed kids!

So, stop wars and crimes! Help the army! Help everyone! Help us kids and that's the reason.

Sincerely,

(Bubby's real name)

_________________________________________________________________

Kind of threw me for a loop when I read it the first time. I mean, we all know these things are going on.....but do we really know what our kids do/don't know about it all? I admit it....I didn't know he was *that* aware of what's going on in the world....it was Christmas time, I would have expected to hear about Pokemon and Transformers and the Warrior Clan books.....

I know that I'm going to be paying attention even more now.... With all the little things that Bubby stresses over, he doesn't need to take on the weight of the world right now too. Don't get me wrong....I'm proud of him that he wants these things to end (so do I and almost everyone else in the world) and that he thought of them over his favorite games/toys/books etc. But if these things are weighing on his mind, it's no wonder that the "little" things stress him out enough for him to pull out his eyelashes/eyebrows/hair. He's moved on to his hair now....has a little bald spot going right on the crown of his head. We took him in for a haircut over the weekend, so now that it's shorter the spot isn't as noticeable. He has fidgets to play with.....to keep his hands busy....even got him a new one this past weekend with the hope that it will help keep his fingers out of his hair/off his face....

Oh!!! Some good news where Lil Man is concerned! A while back I blogged about how Lil Man wasn't being cooperative at bathtime ......and about a week and a half ago, he did a complete turn around. TOTAL turnaround. You couldn't have shocked me more if you'd used a cattle prod....well, maybe....but you get what I mean right? When we got home from the sitters, I gave him a forewarning.... "Lil Man, we're going to take a bath tonight ok?" and he said "Ho-tay" ...I didn't take any notice of that...it hadn't meant "ok" regarding bath time in months, I didn't expect that it had changed. But....we'd been inside all of 5 minutes, I sat down to go thru the mail etc and all the sudden Lil Man slaps my knee and yelled "Mama! BAFF! NOW!" I about fell off my chair. Seriously. I looked at him and said "You *want* to take a bath?? Right now???" And he squealed "Yayyyyyy!!!!" I hopped to it let me tell ya.....if he wasn't pulling my leg, I was taking advantage of it! And, glory be! He wasn't pulling my leg! He joined me in the bathroom (instead of me having to chase his hiney down), started stripping off clothes, squealing and laughing the whole time. He got in the tub and started taking the washcloth, dunking it in the water and putting it on his head.....something that when I'd done it just a day or two before, he's screamed bloody murder over! I called the sitter and demanded.... "Who is this child??? And what have you done with my Lil Man???" They couldn't believe it either.....neither could daddy, who came into to investigate all the squeals and laughter. It's a dang miracle but, after almost a year of red-faced, scream-til-you-almost-puke, tantrums.....Lil Man is back to liking to be clean!!

Sweet!!!!

The rest of the story......

2009-02-18T08:14:00.002-06:00

Holy cow!! I got a comment!! :::woot::: LOL...... Busy doesn't hardly cover Deb, seriously..... Ok....so, the rest of the story....

In the midst of my searching....I had a job change. Now Jackie couldn't contact me if she tried. I didn't give up though....I kept bugging the people at the # she'd given me....kept searching the streets of downtown KC. Finally, *finally*, I got hold of someone at that # who told me he not only knew who Jackie was but *where* she was! Gah....I was soooo excited....I gave him my #'s to give to her and totally expected to hear from her in the next day or so. Didn't happen. For several weeks I called the # and got hold of the same guy....he kept telling me he hadn't been "over her way" yet but he was going "tomorrow" yada yada. Then, during one of the calls, he mentioned that Jackie's "landlord" was about to kick her to the curb because she wasn't paying any rent, she was like 6 months behind. Now, a couple of things that I'd found out while working with the homeless (and in particular about this "landlord") is, if they think they have something you want, they will milk you for money the best way they know how. This "landlord" is basically a "slumlord" .....the # I was calling was one of his houses and he basically letting several people live there at the same time, collecting $$ from all of them. Real winner he is, for sure. Another thing I learned was specifically about Jackie......she's got pride. In all the time I'd known her, she'd NEVER ever asked for *anything*, much less money (exception being when she asked us to take her to drug rehab). She would actually get upset if we spent money on anything for her....very proud she was. So, I knew this guy was yanking my chain, so to speak. Jackie would never ask for money, or even hint that she needed it. I'd had enough, I called the Missing Persons unit of the KCPD to see what, if anything, I could do about filing a report on Jackie seeing as how I'm not family/relative. The detective I spoke with, God bless him, not only was able to tell me (in not so many words) about the "slumlord" associated with the #/house I was calling, he was able to confirm that, at least as of Feb of '07, Jackie was alive. He checked with the morgue and didn't find anything there either. He advised me to push a little harder on the person at the #/house and if I didn't get anywhere, call him back. So, I pushed....I was plenty pissed off so there wasn't alot of incentive needed. I called the #, got hold of the guy who immediately said to me "I'm so glad you called...I lost your #'s, really I did, and I'm going over there today" yada yada. I said that was fine, gave him the #'s again and then told him that I'd better hear from Jackie in the next 24 hours or I'd be filing a Missing Persons report, that I'd already spoken to a detective...that I was very concerned because I *knew* that if Jackie had my information and could call me, she would....that's how tight our bond was. She wouldn't let anyone, or anything, stop her from contacting me...short of being dead. Imagine my surprise when he said that the "landlord" was standing right there and wanted to talk to me. I immediately said that if he was going to ask me for money, he was barking up the wrong tree because 1) I didn't have any extra to give and 2) Jackie wouldn't ask for it. The guy told me no, it wasn't anything like that. So, I talked to the slumlord....and within 2 minutes had Jackie's cell #. Gah....I actually had her #......I tried to remind myself not to get my hopes up, that this could all be a trick or a lie.....something. He kept me on the damn phone for a good 15 minutes, all I wanted to do was hang up and dial that # he'd given me, but I tried to be nice and polite. Finally, he was done and I took a deep breath and dialed.

In less than 2 rings I heard a deep Southern, gritty Cajun voice say ... "Baby girl?!?! That you?!?!" I'm a baby....I started crying. After searching for as long as I had, to finally hear her voice and *know* that she was alive and (at least sounding) well....it overwhelmed me. She laughed and told me to stop crying, that she was ok, just fine...."fat 'n sassy"......in short order? She was....Jackie. Just Jackie. And I couldn't have been happier about it. LOL. This all happened on a Friday, a couple of weeks before Christmas...ok, if you insist....it was December 12th, approximately 3pm....wha?? You didn't think I'd remember something this important?? LOL. After talking for about 20 minutes, we made plans for me to come visit her the next day where she's living.

We spent about 2 hours the next day, catching up, laughing, crying.....the whole nine yards. I wish I could say that things are wonderful and perfect, but, this is real life....you take what you get, right? She's living in a basement, and I use that term very loosely, that I wouldn't want my worst enemy's dog to live in. She keeps it clean, cleanliness isn't the issue....it's the condition of the said "house", her asshole neighbors upstairs and the slumlord. She has a roomie, a buddy of hers named Mike (it's a brother/sister situation, no worries on that), he works thru temps services etc......she's got bad knees and can't work a lot but plans on working the sports arena when baseball season starts up again. Between the two of them, and the church up the street, they (barely) keep their heads above water. The jerks upstairs.....lordy but what a mess they are. White trash, alcoholic, meth-smoking punk ass jerks. And that's just the "mom". And I use *that* terms very very lightly. There's mom (in her 50's), 2 daughters (late teens and early 20's) and an asshole son (late teens) .....and 1 granddaughter (a baby, belongs to the early 20's daughter) and 1 grandson (4 yr old, part-time) that belongs to an older son who *doesn't* live with them. Seriously...they are one hot mess. They don't like Jackie and Mike living downstairs, stomp on the floors at all hours, the baby cries, the toddler throws tantrums, they (the "grown ups", including the teens) yell and scream and curse at the kids......they play thumping, punk-ass music from morning til late late night....."mom" spends her disability checks on alchol and drugs, the older daughter gets food stamps and WIC, the late teen daughter supposedly goes to school and the boy? He's just a lazy ass jerk who thinks he's all bad and intimidating. Ha. There's a story about him that I'll have to share on another day......it's a hoot. I'll give you a hint.....for some unknown reason the slumlord believes that I work for Social Services....I don't, but he thinks I do....and he told the family that. Boy, are they on their best behavior when I come around.... LMAO......

Bad blog owner! Bad!

2009-02-17T13:56:00.003-06:00

Sheesh....so, yeah, it's been a while hasn't it? Well, I don't think I'm going to apologize....I mean, it happens to all of us..it's called life, yes? And, I'm thinking that with one reader....Hey Deb!! I'm betting you never noticed I was gone, did ya?? LOL..... We need to talk girl!

Anyhow, work has been super crazy - tons of new stuff to be entered in the computer.....and a good friend of mine that I worked with, found a new job. I still have friends here, but I sure miss talking to her LOL.

What else? Hmmm....oh, I am now taking Atenolol in addition to my Zoloft and Xanax but gee, I just wasn't taking enough drugs *rolls eyes* The Atenolol is supposed to help with the general anxiety symptoms I've been having.....heart palpitations, hand tremors, tightness in my chest.... We'll see, it's only been 3 days so far.

The holidays were good, the boys got spoiled rotten....got to see my brother who flew in from L.A. Spent time with Randy's family......

And something really incredible happened for me right before the holidays. About 6-7 yrs ago, I started a homeless ministry at the church we were attending. During that time, I met many homeless people...mostly men, but a few women. One of the women, Jackie, became very dear to my heart......she was a tiny, feisty, prideful Cajun from Louisiana.....she was about my mom's age and treated me just like a daughter....she called me "Baby girl" . For about 2-3 yrs, Randy and I ministered to her, helped when we could (or when she would let us, lol) , then one day she called me out of the blue. "Baby girl, I need you to come get me....I cain't do this no more, I need help" "Help" being drug rehab.....Jackie was so tiny because she basically lived on crack cocaine and alcohol. But, we were ecstatic that she wanted to get off the drugs, off the streets....and that she'd chosen us to help her. And we did...but she did all the work....drug withdrawals, rehab....the whole nine yards. After she'd completed the program, they helped her get an apartment in a "no-drug" building and a FT job. She worked her butt off......and not being on the drugs, she put on some much needed weight. She no longer looked like she'd blow away in the wind. She held her own for about a year or so when new management came into her job. She lost her job. In short order, she lost her job, her apartment.....and sold all her possessions (including the A/C unit) to buy crack. She was back on the streets....for about a month, I didn't hear from her, couldn't find her....I was really concerned. I'd found out about the job loss etc....and pretty much guessed the rest of it. She finally called me at work.....she was living with "some people" in a "house somewhere in the city" .....she was very out of it. The next time, she gave me a phone # to reach her, and that's how we stayed in contact. Until the fall of 2005. I found out I was preggers with Lil Man and wasn't having an easy time of it, and we found out that Papa Lou's leukemia had come out of remission.....and, after another round with chemo and radiation, there was nothing else the dr's could do. So, Feb of '06 I lost my father-in-law, and in March had Lil Man. Talk about the bitterness of sweet times. With everything going on, it wasn't until the summer of '06 that I realized I hadn't heard from Jackie in a long LONG time. I felt awful....I knew she'd understand, but I still felt awful. I dug out the # she'd given me ....and got told "bitch don't live here no more" and hung up on. Since that time, I've been searching and searching for her.....spending time downtown looking for her, online looking for clues.....called that # time and again, basically being told the same thing over and over....I broke down and called her family in Louisiana....there's "history" there and they hadn't seen/heard from her in longer than I had and it could stay that way "thankyouverymuch". What.ever. Assholes. So I kept searching.....and searching......

I'll finish this up tomorrow....hate to leave you hanging Deb, but work calls!!!

2008-12-08T08:22:00.003-06:00

Thought about telling you all about our weekend but, I don't have pictures ready yet....so, instead you get a me-me that I read over here and decided, shoot....if she can meme herself, so can I. Besides, I'm feelin' kind of lazy this morning. Pics tomorrow...promise!

1. Five names you go by
a) Grace b) Gracie c) Shawne d) Mom e) honey
2. Three things you are wearing right now:
a) dark grey docker type pants b) make up c) grey patterned top
3. Two things you want very badly at the moment:
a) a NAP b) for my stupid panic attacks to take a frickin' hike already
4. Three people whom I would like to see fill this out:
Anyone who reads this! Just take the meme and run with it.
5. Two things you did last night:
a) Watched 88 Minutes w/ hubby b) Laid in bed with Lil Man and watched cartoons til we fell asleep
6. Two things you ate today:
a) Yogurt b) a Pepsi? Srsly, I haven't had any other food....it's only 9am!
7. Two people you last talked to on the phone:
a) My doctor's office b) My husband
8. Two things you are going to do tomorrow:
a) Work b) Get Bubby's meds refilled
9. Two longest car rides (I’m interpreting this as road trips and I can't remember road trips from childhood):
a) From KC to TN on our honeymoon b) KC to Branson
10. Two of your favorite beverages:
a) Pepsi b) Peach flavored tea

AND ANOTHER:
Pick a color for the things that you have done. Mine are in bold letters.I have…
1. Started my own blog
2. Slept under the stars
3. Played in a band
4. Visited Hawaii
5. Watched a meteor shower
6. Given more than I can afford to charity
7. Been to Disneyland/world
8. Climbed a mountain
9. Held a praying mantis
10. Sung a solo
11. Bungee jumped (and I never will)
12. Visited Paris
13. Watched lightning at sea
14. Taught myself an art from scratch
15. Adopted a child
16. Had food poisoning
17. Walked to the top of the Statue of Liberty
18. Grown my own vegetables
19. Seen the Mona Lisa in France
20. Slept on an overnight train
21. Had a pillow fight
22. Hitchhiked
23. Taken a sick day when you’re not ill-but Lil Man was sick, does that count?
24. Built a snow fort
25. Held a lamb
26. Gone skinny dipping
27. Skied a marathon
28. Ridden in a gondola in Venice
29. Seen a total eclipse
30. Watched a sunrise or sunset
31. Hit a home run (OK, so it was in a game with small children)
32. Been on a cruise
33. Seen Niagara Falls in person
34. Visited the birthplace of my ancestors
35. Seen an Amish community
36. Taught myself a new language
37. Had enough money to be truly satisfied
38. Seen the Leaning Tower of Pisa in person
39. Gone rock climbing
40. Seen Michelangelo’s David
41. Sung karaoke
42. Seen Old Faithful geyser erupt
43. Bought a stranger a meal at a restaurant
44. Visited Africa
45. Walked on a beach by moonlight
46. Been transported in an ambulance
47. Had my portrait painted
48. Gone deep sea fishing
49. Seen the Sistine Chapel in person
50. Been to the top of the Eiffel Tower in Paris
51. Gone scuba diving or snorkeling
52. Kissed in the rain
53. Played in the mud
54. Gone to a drive-in theater
55. Been in a movie (documentary)
56. Visited the Great Wall of China
57. Started a business
58. Taken a martial arts class
59. Visited Russia
60. Served at a soup kitchen
61. Sold Girl Scout Cookies
62. Gone whale watching
63. Got flowers for no reason
64. Donated blood, platelets or plasma
65. Gone sky diving (and I never will)
66. Visited a Nazi concentration camp
67. Bounced a check
68. Flown in a helicopter
69. Saved a favorite childhood toy
70. Visited the Lincoln Memorial
71. Eaten caviar
72. Pieced a quilt
73. Stood in Times Square
74. Toured the Everglades
75. Been fired from a job
76. Seen the Changing of the Guards in London
77. Broken a bone
78. Been on a speeding motorcycle
79. Seen the Grand Canyon in person
80. Published a book (I've been published IN a book...does that count?)
81. Visited the Vatican
82. Bought a brand new car
83. Walked in Jerusalem
84. Had my picture in the newspaper
85. Read the entire Bible
86. Visited the White House
87. Killed and prepared an animal for eating
88. Had chickenpox
89. Saved someone’s life
90. Sat on a jury
91. Met someone famous
92. Joined a book club
93. Lost a loved one
94. Had a baby
95. Seen the Alamo in person
96. Swam in the Great Salt Lake
97. Been involved in a law suit
98. Owned a cell phone
99. Been stung by a bee
100. Ridden an elephant

Good Lord but I'm a boring and deprived person LOL........ I can't believe how many of those things I haven't done!!! Granted, some I wouldn't *want* to do, ie....rock climbing, bungee jumping etc......but some of the others, I'd love to do---go to Paris, see the Alamo, visit the White House, go to Disneyland......

So.....what about you??

Of turkeys and men....

2008-12-02T14:35:00.004-06:00

Yeah, that's about as creative as I feel today. Sigh. We've been so slammed here at work, I didn't even get to wish anyone a happy Thanksgiving ....so, belated tho it is, Happy Thanksgiving! We spent it at my parents house (my mother in law is out of town til tomorrow) and my brother came in from L.A. .....and couldn't wait to hop his hiney on a plane back there after the cold and snow we had over the past weekend, LOL. It was a good time.....all the usual food trappings etc etc and visiting with family etc etc......ate too much etc etc......

I didn't step one foot in any department store on Black Friday. Hell no. Not even going there. Besides, we did end up getting the majority of our shopping done a couple of weeks ago......a couple of gift cards are all that's left.

Other than that? We've all been sick ('cept for Bubby....I don't know how the hell the kid does it, but he never gets sick) with something. Lil Man has strep throat, lovely. I swear to the heavens that Randy has bronchitis.....and I'm pretty sure mine's just your garden variety cold....blech. We lazed around all weekend, watched movies..... were very boring overall.

But, when I came in this morning and was catching up on my blog reading....I came across an entry that ....well....it just said everything that I've wanted to say re: autism and Aspergers and high functioning and low functioning and bad parenting ....and all that other stuff. Here.... go read this and then come back and let me know what you think. She's one of my very favorite bloggers.....straight up honest, silly, funny and a damn good writer..... I'm hella jealous ;-) Seriously though...go.....read.... I'll wait.

Back? So, what'd you think? Probably everything I've wanted to say about Dennis Leary and his sorry assed book (or, for that matter, anyone who is as delusional and misinformed as he is about autism and ASD), she said it better than I could ever imagine.

Almost Only Counts in Horseshoes and Hand Grenades....

2008-11-19T12:17:00.003-06:00

......Sigh...... We werethisclose to having all of Friday night and most of Saturday sans kiddos. We were totally hyped and ready to go out for dinner where we could actually talk to one another without being interrupted eleventy billion times with "Mom?" or "Dad" or "No no no no no" -that one is courtesy of Lil Man. We were looking forward to spending most of Saturday getting our Christmas shopping done..... ok, maybe "looking forward" is a little grossly overstated, but you know what I mean...the shopping would actually BE DONE. None of that running around a week (ok, 2 days) before Christmas searching for that one certain thing that we just have to have for that one certain person. Lord but I was looking forward to that. The boys were going to spend the night at D's house (this is Lil Man's caregiver during the week, and an occasional weekend etc. He has watched him since Lil Man was 8 wks old) on Friday night, watch a movie, eat popcorn etc. Then Saturday D and his wife were going to take the kids to a movie and Chuck E Cheese (gah!) and we'd pick them up sometime early evening on Saturday. When D suggested it, I was all over that in a heartbeat "Heck yeah, you bet it's ok". And then I called my mom. She burst my bubble in about half a heartbeat, I swear it. I offered to provide the turkey for Thanksgiving dinner this year.....no, not "cook" it, just provide it.....Thanksgiving is at Mom and Dad's this year so she's cooking the turkey, I'm just providing it to be cooked. ANYhow.....I called and asked if we could just bring it over on Saturday...... to which she says "Oh, you mean bring it to Ali-bug's birthday party?" (Ali-bug being my one of my sister's oldest daughter...she'll be 4). And I was struck stupid for a minute (shut up, quit laughing) and then I replied, with a HUGE sigh "OH HELL. I totally forgot about the party.....and I just frickin' talked to R last night about it and what Ali-bug wanted. CRAP CRAP CRAP!!" and looked down just in time to see/hear Lil Man say "Cwap?" OH HELL. Not only had I forgotten the birthday party, I just taught my almost 3 yr old a semi-swear word.......gah, definitely on a roll.

Soooooo....here's hoping we can get the Christmas shopping (and Ali-bug's birthday present, damn it...don't forget the present!!!) all done on Friday evening. Quit laughing.

4th Grade Expectations

2008-11-17T11:04:00.003-06:00

So....at the beginning of the school year, the 4th grade students had to write a short essay on "4th Grade Expectations". I want to share Bubby's with you:

"I have a hard time paying attention for reading. I will try harder to stop reading too much here and more at home. I will try to have self-control by not getting mad. I will particpate in Math. I will respect others the way I want to be treated. I will follow directions so that I won't be in trouble. I'll take responsibility to be good. I'll enjoy each other to make friends."

I love this. For so many reasons, but I just absolutely love this and the fact that Bubby came up with it on his own. Some of them make sense (reading too much at school ....he races thru his assignments so that he can read) .... "I will follow directions so that I won't be in trouble" -this is a big thing for him as it really stresses him if rules are broken so he tries really hard to follow directions/rules. But some of them have me absolutely scratching my head and sayin' ...."Wha????" "I will try to have self-control by not getting mad" .....outside of getting mad at me or his dad for discipline (ie, grounding from the PS2 etc) I have never seen this child get "mad" ....or anything even closely resembling "mad". And even his "mad" at being grounded or whatever has never gone beyond a slammed bedroom door. "I will particpate in Math." -I'm not sure what to make of this one. He's stated that Math is his least favorite subject....yet, it's his highest grade, A-. And I love "I'll take responsibility to be good" - this is something for him...a big something. We've been working really hard for...well, for forever... on getting him to take responsibility for his actions etc. His favorite "excuse" is "maybe my medicine isn't working." or "But I didn't take my pill today" (he's on Concerta for his ADHD) .....and we always respond that he has to be responsible for his actions, not his pill...all the pill does is help him concentrate/focus more but that ultimately, he's responsible for his behavior. The last expectation that he lists just breaks my heart.....even with a word or two left out. "I'll enjoy each other to make friends" it's just so damn hard for him to make friends..... but you know what? The ones he does make, he keeps and they're really good friends.

The hell??????

2008-11-14T12:15:00.003-06:00

Well, alrighty then. I'm a little peeved at this point. I had a post all done up, went to add the pictures and my words disappeared. As in gone. As in, damnit I don't have the time to retype all of that!!!!

Hell, I guess what you get instead (because there's a ton of you reading right? You're just all quiet and lurking? Right??? .....sigh.....) is the pictures of the crocheting that I'm doing for my co-worker who is having a baby girl come February. The smaller of the two pictures is the start of the bunting I posted about earlier, and the other is the sweater/cap I'm going to do up--but will be in a coral color instead of pink.

In short, we've all been sick at my house. Work is busy. Randy's work is in a hiring freeze and letting people go (hopefully not Randy). Bubby is adjusting to his new schedule and activities at school that allows for his IEP implementations--but at the sacrifice of his eyelashes (anxiety/stress causes him to pull them out). Little Man apparently is on a hunger strike that includes anything that would be "normal" dinner food.....even cheeseburgers, chicken nuggets, spaghetti or anything else I put in front of him that is not a fruit cup or fruit related. *roll eyes* I guess I should just be grateful he's eating fruit right?

Off to enjoy (not) another quiet (not) weekend. Randy is on-call which means I'll probably spend most of my weekend solo parenting. Oh joy.

Ahhhh....Family Time.......

2008-11-10T08:57:00.000-06:00

The weekend was actually really good. Mainly quiet - or, as quiet as you can get with a 2.5 yr old and 10 yr old. No place to be at any certain time.....nothing that *had* to be done. We got new tires on my car ($245 cripes!!) and had lunch out at Logan's Roadhouse....yum! Rented a couple of Blockbuster movies and spent the evening quietly at home. One of the movies we watched was Kung Fu Panda......freakin' hilarious!! Both boys thoroughly enjoyed it and Little Man laughed even when he didn't know what he was laughing at :-) Went to church Sunday morning, the preschool choir performed-they were soooo cute! Then, another quiet (some would say boring) afternoon at home. I absolutely LOVED it. I worked on a crocheting project.....a co-worker here is having a baby girl come February and I'm making her several items. The one I'm working on now is this bunting I love this pattern......it's a simple repeat so I can work on it while watching tv, yet the stitches are interesting enough to not bore me to tears. Also, I'm not doing it in pastel pink, but rather it will look like this. Well hell, looks like my cell phone and email aren't going to play nice today. Maybe I'll be able to add them later. Now, as for last night? Oh my hell.....it was not good. For the past 3 months or so, Little Man has developed a terror for bathtime. I don't know what brought it on or why he's scared but holy jebus, the screaming and crying and red-faced, shaking toddler that used to LOVE bathtime.....not so much anymore. All we have to do is mention the word bath, and he starts sniffling and fussing. Start the bathwater and he stays as far away as possible, crying. Bring him in the bathroom and he's full out bawling and crying "no, no, no" while waving his little hand towards the tub. Actually put him IN the tub? Oh Lord have mercy.....full out crying, screaming, flailing his hands and whole body shaking like a leaf on a tree in a windstorm. Take that times 2 when you go to wash his hair. He won't sit in the tub.....that would take a miracle from up above. And while I have no doubt that such miracles *can* happen? They ain't happenin' in the bathtub at our house. After no nap on Sunday afternoon, and the fit at bathtime, LM fell asleep pretty damn quick--all cuddled up in my lap--which totally negated the fact that while I was trying to rinse his hair he called me "mean mama!!" in the midst of all the wailing.

Sigh....if anyone reads this and has any ideas on how to make bathtime less traumatic? I'm listenin'..........

Elections and IEP's and Baseball, Oh My!!

2008-11-05T09:14:00.000-06:00

Wow.....what a historic moment for our country. Absolutely incredible and awesome.... and that's all I'll say here on that subject ;-)

We had Bubby's IEP meeting last week. It went so incredibly well.....so smoothly. It was everything we'd hoped for, and then some. Bubby has 5 academic goals to work on and there are some additional goals for social skills that are being added..... the final copy should come home in the next 2 weeks or so. After it was all over, it was like a huge HUGE weight came off my shoulders....I was so relieved. Relieved that it was over (the whole dreaded "first meeting" thing) and relieved that it went so well. The team had some fantastic goals in place and accommodations set up that we hadn't even thought of! With his handwriting being as bad as it is, it of course figures into his goals (2 of them as a matter of fact).....what we didn't anticipate was the accommodation he has been given. Whenever he has an assignment, classwork or homework, that is more than 3 written sentences.....he's been provided with an Alpha Smart to do his work. It's awesome.....his teachers can hook it right up to their computers and download his work to be graded! When he has state/district wide assessments that are all handwritten, the school will provide someone to scribe his answers for him, or, if no one is available, he can use the Alpha Smart. They are doing something called a Sensory Diet (great site and info). Now, I'd never heard of something like this before.... they explained that they will be doing joint compression for Proprioceptive input, brushing (using a brush like a fingernail scrub brush) lightly up and down his arms and some kind of physical activity ie, wheelbarrow walk, carrying books from one room to another etc..... He does the Sensory Diet every day, 2X's a day-morning and afternoon. This should help him become more aware of where his body is in space--he has no concept of other people's personal space because he isn't aware of his own body's space. It so hard to explain sometimes!!!

Something else that's hard to explain? My feelings last Sunday afternoon when I was watching my dad play baseball with Bubby. Bubby doesn't like physical activities/sports etc because he lacks the coordination and other skills to do them. But, for whatever reason, Bubby wanted to and so out they went to the backyard with an aluminum bat and tennis ball to play. Mom and the rest of us went too (Randy and I and Little Man) ....we played with Loki Baby (mom and dad's Rottweiler) and Little Man played on the swing set. But what caught my attention was Dad and Bubby. Dad was pitching to him and he would actually hit the ball a time or two, then miss a few..... Dad went out and helped him adjust his hold on the bat -showing him how to hold it so when he swings it doesn't arc up but rather straight out. After Dad showed him that, he went back and threw a pitch....and Bubby hit it, and he hit it good. The LOOK on Bubby's face.....it was a look of PURE JOY. A spontaneous reaction to something in his environment.....those moments are so few and far between.....I can't even begin to tell you how it felt to me. I literally had to turn away because I started crying. I wish, oh how I wish, that I'd had my camera out there and ready. Instead, I grabbed that moment and I will hold it close to my heart. Like I said, few and far between. At least for now.....

On the road to mending.....

2008-11-03T15:38:00.000-06:00

Let's see.....when I last posted, I had what I considered a major breakthrough in my panic attack triggers. One would think the attacks would abate somewhat at that point, yes? Not so much. I had a kind of bad one and the next day made an appt to go back to Dr. K and talk some more. Apparently, I have issues.... lol..... I mean, it's not really funny, but then again...it kind of is. I can't just have one issue, I have to have a "set" of issues. Ugh. With all that's been going on with Bubby's IEP and Aspergers etc etc, I've been having hella issues with Lil Man. He throws a fit when I change his diaper, put his clothes on/off, brush his teeth ...... he will do any of those things for any(every)one else, except me. There were a few times that I thought to myself "sheesh....my little boy does NOT like me" .....and I let him run rough-shod over me by not really dealing with those issues as they happened. More often than not, I'd ask Randy to do it......and Lil Man would happily trot over to Daddy and do exactly what he *wouldn't* do for me. I really lost alot of my confidence in my parenting abilities.....a LOT. When we hit on this during the session, Dr. K told me I have got to reassert my authority as "mom" ..... and we talked about how I should do this. I just wanted to hit myself in the forehead...."DUH"......plain and simple, basic parenting things. Yes I know these things, but being so focused on the other issue, I totally lost things for a while.

I am happy to say that I am reasserting myself, and Lil Man *has* taken notice. The very first morning after my session w/ Dr. K, I went to change LM's diaper and get him dressed to go to the sitters and he started to rant and rave and kick and thrash......I loudly, and firmly, told him that "I *am* going to change your diaper, and get you dressed and if you don't stop this nonsense, you will sit in timeout". We've used timeout before a little, and that, along with my tone of voice stopped LM in his thrashing tracks....he looked at me like "Who are you? Where's mommy?" but, I did change his diaper and got him dressed and he did NOT have to sit in time out. And it's pretty much played that way since then too......the only exception being if he's really tired.....and that's understandable, I'm pretty damn cranky when I'm tired too.

Breakthrough (Part Deux)

2008-11-03T15:35:00.000-06:00

Well, for whatever reason (certainly unknown to me), my original blog has disappeared...as in it's out there to read, but I can't update it. Grrrrr........after trying for a week to get some help in restoring it, I've just decided to go ahead and create a new one - just start over from square one. Except on a different date....yeah, there is that.....ugh. Oh well.....can't be helped I suppose.

Never a better time to start a diary or, rather, a blog, than when you have a major breakthrough in your life, yes?For the last few weeks I've been having some really, really bad panic attacks. Not that any panic attack would be good, but these have been exceptionally bad. This isn't my first go-round with them either ('nother story, 'nother day....maybe) but this is the first time that I hadn't a clue as to what was triggering them. So, off to the dr for meds again....Zoloft-it is my friend; Xanax -an even better friend (but don't tell the Zoloft, 'kay?). The attacks have ranged from "meh.....I can breathe thru this" to "ohmigodIcan'tbreatheIcan'tstopbeingsickIcan'tkeeptheXanaxdowntakemetotheER"......yeah, *that* one was fun. Not. Some of the smaller ones have happened at work, but, my boss is a saint. When the attacks first started I was upfront with her about what was going on and she's been exceptional.....truly. Perhaps before I go any further into the breakthrough on the attacks, I should introduce myself and my family? My name is Gracie....I'm in my late 30's, married for 12 years to a wonderful man, Randy, and we have 2 awesome boys....Bubby and Lil Man ...obviously not their real names, we're not *that* mean ;-) Bubby is our oldest, having just turned 10 (!!) . He is a "mini-me" down to his little bones.....our birthdays are only 10 days (and oh so many years!) apart and we couldn't be more alike. Well, except he's incredibly intelligent, loving, gentle, polite.... He loves him some Star Wars (ask him anything about it, he'll have the answer) and he's an awesome big brother, a book-worm and a non-stop talking, rule follower. He also has Asperger's Syndrome. And he's just perfect in his own quirky, loving way. AS is an Autism Spectrum Disorder.....a form of autism if you will. he is exceptionally high-functioning, if a little quirky and eccentric. This is a fairly new diagnosis for us, maybe in the last 8 months or so...... I'm sure the topic will show up alot here.Then there's Lil Man.....he's almost 3 yrs old (will be in March). LM is a wild, rough 'n tumble, cars 'n dirt lovin' little boy. He keeps us on our toes with his inquisitive and rambunctious ways.....he's also a "mini-me" of his daddy......oh lordy help us all LOL. He's talking up a storm (LM, not daddy...altho, he has his days too) but if you're lucky, you'll understand about 50% of what he says....and only then if you're already familiar with his vernacular. Up to the last couple of weeks I've even had to translate for daddy. We had a speech evaluation done but for right now, the powers that be in the evaluation world, don't seem to be too concerned. He knows all his colors and can point them out, loves to jump and hop and play with his cars and draw on paper (and sometimes himself) with pens and crayons.....The both of them are handsome little tow-headed boys with gorgeous blue eyes and eyelashes any girl would love to have...... I, however, could be a little biased in my opinion LOL...... Also sharing our humble abode with us are 3 furbabies....2 of the canine persuasion, Rascal and Sissy, and one of the feline, that would be Marcus. Rascal is the oldest at 12 yrs, then Sissy at 8 yrs and Marcus is a little over a year old. Love them one and all, most of the time LOL. Ok....niceties out of the way....back to the attacks and the breakthrough. We went to counseling last Thursday night (normally Bubby is with us as we're learning about his AS and things we can do to help him), just hubby and I. As soon as we walked in Dr. K says "Something has happened- What's going on?" I started explaining about the panic attacks....he asked if I did my breathing exercises.....I told him I tried but nothing was working and that I'd gone to my primary care dr and gotten back on Zoloft and Xanax. So we started talking, mostly Dr. K was talking, trying to pinpoint what was going on. And wouldn't you know it, we started talking about Bubby and the upcoming IEP meeting and I broke down.....totally lost it and cried for a good 15 minutes. What it boils down to is I'm afraid that I'm not adequate enough to advocate for my son.....that I will fail him if I don't do everything absolutely perfectly right at this (our very first!!) IEP meeting, I've taken on the full responsibility to learn anything and everything I can about AS and ASD's and special needs and the schools and the laws and accommodations for IEP's and I'm afraid that I'm going to miss something critical that would be so helpful for him...and....and...and.....HELLO? Breakdown much? Yeah, totally....right into panic attacks.I really do have alot of fears about missing something.... I mean, hell, he's 10 yrs old now, and we're JUST finding out about having Asperger's?? Are you kidding me?? Observant much mom and dad???? Never mind that he has ADHD as well and that disorder has masked alot of his Asperger's. We always just thought he's our quirky kid....our little bounce off the walls/can't sit still go boy go! Our little "smarty" pants because he's just that damn smart.....our shy little guy that couldn't look you in your eyes for more than 2 seconds if his life depended on it.......our little bookworm who would rather read than do...you know, BOY things like ride bikes and play in the dirt and climb trees....... But you know what? He's ours.....he's perfect in our eyes and we love him dearly.........