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Archive for the ‘autism’ Category

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.

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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? =)

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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.

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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 http://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 😉

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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.

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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………

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