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Archive for the ‘IEP’ Category

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.

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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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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!!

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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…..

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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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