I'm Not Crazy

For several years, various friends (that's right, not even enemies) have been trying to diagnose me.

I have been friend-diagnosed as psychotic, a sociopath, neurotic, Asperger's (not that I consider that a form of crazy - just sayin'), and told I have anger management issues. One, I manage my anger just fine. I verbalize it and don't act on it.. I call that managed. And because I can do that, I'm obviously not a sociopath. (I'd like to say that also disqualifies me on the psychotic stuff too, but I don't know if that's ACTUALLY the case. *shrug*)

I might be a bit neurotic. I do have anxiety and I can tend to be very insecure about certain things, which cranks up the volume on my anxiety, but if that's the definition of neurotic..... you got me.

I might be a bit spectrum. I seem to pass all the screening tests with flying colors, but I maintain that my son's counselor states that the simple fact that I broached the question to him "proves" that I'm not spectrum....... WTF does that even  mean? That doesn't feel like an answer to me, but perhaps my need to dissect that statement is indicative of my neurotic nature.

I have some issues (don't we all), I'm not in denial. I have some self confidence issues. I have some anxiety issues. I have some weird OCD-like tendencies (who doesn't) (I get it from my mother.. who probably gets it from her mother)(It's a family tradition).. I have some issues with "right and wrong"... not that my lines are blurred. I know the difference between right and wrong, and act accordingly (almost always). My issue seems to lie in knowledge. I can't leave an obviously wrong statement alone. I have to correct it. Or, if I'm not certain, but strongly question... I HAVE to look it up. It's a compulsion.(I blame my mother for the countless times she told me as a child, "Look it up".) It's not a need to prove anyone wrong, per se, but a driven need to stop the proliferation of senseless and incorrect ideas. (see that... I had to double check dictionary.com to make certain I wasn't using "proliferation" improperly.) I'm constantly double checking the dictionary and I google everything..

One of my friends on Facebook posted a need for a laugh, "Someone please tell me a joke"...
One of her friends posted this:

Thor was flying around a castle on his Pegasus saying, "I'm Thor! I'm Thor!" The King heard this from his tower and poked his head out the window and replied, " Well of course your thor thilly! Your riding without a thaddle!"
Hee hee- my all time favorite:)

One... I showed great restraint.. I did not flame her. I wanted to... soooooooooo badly, but I didn't. I know it's a joke. HOWEVER, it's hard for me to find the funny when my brain is exploding from the OBVIOUS jumbling of mythologies. Perseus rode Pegasus. (NOT Hercules as Disney would have you believe! and of course, not Thor.. though that seems stupid to point out.) Thor could run as fast as a horse, and when he didn't feel like doing that he had a chariot pulled by goats.(Goats! Whaaaa?? I know, right?) (Further proof of insecurity, I KNEW these 3 points, but googled each just to make sure that I was remembering correctly.) **I can't go without saying... In the times that Thor was an actively worshiped god, how many Norse castles (with towers) are we likely to find?? And.. "Your" ... should have been "You're" ... But slightly overlook-able simply because joke tradition is verbal. *sigh* (Also, a point for Asperger's.... religion/mythology has certainly been a "special interest" for me for ohhhhhhhh about 20 years... at least.) (Though this I also blame on my mother. Again, just sayin'.)

The point is.. I have issues. But I manage them. Therefore, I'm all good. I don't need a label to fit in... or do I?

Google's not going to help me on this one, is it?

Talk Thursday: I love to Bitch about.................

OMG... What don't I love to bitch about??

Actually, I don't think I bitch that much, I work things out verbally... (Does that sound better?)

I've been working a lot lately. I got a second resource job, this one back in patient registration. People either treat me like I don't know anything, or that I should know everything since I've done the job before... 5 years ago, on a different computer system.

I long for a new car and some C4, so I can blow up the current one. We think we've figured out the problem, the starter, now I just need someone to have the time to help me fix it.

Burp has started Pre-Team in swim. He seems to be doing well, though we've only completed one week. His coach thinks the back stroke will be his "thing" but has told him he think he'd make a great water polo player. Burp is excited to go to practice each day, and that is all I care about. I think at this point in his life it'll be incredibly good for him to have something that he feels he's good at and gives him a niche, of sorts. He's currently going 3 days a week, for 45 minutes. If he gets invited to join the swim team it'll be 5 days a week for an hour and a half. I hope he still enjoys it when it gets that intense.

Still waiting to hear about the Charter School. Every appendage that can be crossed, is crossed. 4th grade was hard for him socially and academically, I just think that it would be so much better for him to be in a school that is made up entirely of his real peers, to be taught to his strengths, and for the teaching staff to specialize in autism. I actually can't think of a better situation for him.

We started him on a new medication. Strattera. He's still on the Concerta, as it takes 4-6 weeks for us to really know the effect of the Stratterra. His psychiatrist thinks that if the Stratterra works as well as he's hoping, we might be able to take him off both the Concerta and the Zoloft. Trade a stimulant and an antidepressant for one, non-amphetamine medication? HELL YEAH!! It seems to be working really well already, on week two. HOWEVER, his counselor still says wait and see. He says that often it will seem to work really well at first, then not so much later. However, even in these cases, it still seems to work better than the previous meds... I'm like, what the hell's wrong with that?.. a little better is still better. AND IT'S NON-AMPHETAMINE!!! The first week seemed to go well... and we just upped the dose of Stratterra, next month we'll lower the dose of Concerta. I'm kind of thinking about calling the shrink and seeing if we can lower the Concerta early, since it seems to be going so well, but maybe it shouldn't be rushed. I don't know.

It makes me wonder... I did a little research on the two meds, how and why they work differently... They are both re-uptake inhibitors, one of dopamine and the other serotonin. (to be honest, can't remember which is which) I'm a little irritated that it took this long to try a totally different med. (This is where the bitch comes in) From the very beginning, I've been saying that while I saw a little improvement, I never saw the improvement I expected to see. All they did was up the Ritalin, changed to Concerta (12 hour time release), then up that. Then shuffle us to different doctors because the current doctor wasn't comfortable with the high dosing levels. WTF? WHY WHY WHY WHY???????????? didn't we ever try a different med? Not til I throw a fit and demand to know why we've never talked non-stimulant meds do we actually get to discuss one. When I research stuff and ask about it, they brush me off, or treat me like another "internet self-diagnosing pt"... Doctors are supposed to give you the information to make informed decisions... What a joke. You know what happens to people who have an opiate addiction??? Their bodies stop making chemicals that cause you to feel joy and euphoria.. That's why it's so hard for an addict to quit. There have been studies that show that children given amphetamines when they don't need them, have this same problem.. But when they first prescribe this med and you try to ask if this could cause problems later, they don't talk about the oopsies. They tell you that children medicated with amphetamines don't become drug abusers, in fact, it's more likely that if they don't have them they will end up self-medicating with street drugs.... They don't talk about the consequences of long-term use of amphetamine medications when it's inappropriately prescribed. Unfortunately, that's something you find out about later. They just tell you that if it's not the right med it won't improve his condition. Well, what if the problem involves both chemicals, serotonin and dopamine, but one only slightly, the other more so.... Then you'd only see slight improvement... right? Now it seems logical to me... but they never gave me the information to logic it out.

I am so angry about the current system of this thing. In Oregon, the schools are in charge of initial diagnosis. The school psychologist diagnoses your child and gives you a piece of paper to take to your pediatrician. Your ped gives you meds... ONLY if your child seems to not respond appropriately to the meds do you see a psychologist, then a psychiatrist.. NO ONE ever gives you literature. NO ONE ever gives you something that says, "These are your options... this is what ADHD is" OR AUTISM, for that matter. Am I the only one who sees a problem with this system? I have BEGGED my son's doctors for a referral to the CDRC, so that he can have a complete analysis of his issues, and they keep saying we don't need it. OK.... My son is diagnosed with ADHD, Anxiety Disorder, and Asperger's syndrome. Considering that the first two are often misdiagnoses of symptoms of the third, don't you think that it's logical to get a proper evaluation from people who fucking know what they're doing? Especially since he had 3 independent evaluations for each diagnosis and the first two never picked up on the third? What if there is something else going on? They only evaluate for the thing you're asking them to look for. Does he have ADHD? Yes......... ok... does he have Anxiety Disorder? Yes........ ok... are you certain he isn't autistic?.......... "We find it very probably that he has Asperger's Syndrome"................................. "I'll second that diagnosis", "OK, *sigh*, I'll support that diagnosis too."

WTF? Is this really how it's supposed to be?

I don't know if this is a rant or a bitch... but now I'm really fucking pissed off, and need to go.

South Korean Study Says 1-38 Children may Have ASD

WOW!

Caught this on CNN while putting together 5+ weeks worth of Math Homeschooling for Burp.
CNN: South Korean Study may lead to higher autism estimates.......

Talk Thursday: And Little Did I Know

So, we had our IEP meeting, a little early because I was concerned about how  Burp was doing in Math.

Last year, I was told he didn't qualify for intervention because he was at around the 20th percentile, and they don't do intervention until the 10th or lower. Good thing I called for the IEP, because little did I know... Burp is now at the 4th percentile in Math.

Two things were put on the board. One, testing for learning disabilities. Stupid me, I'd figured that had probably been included somewhere in all the previous testing... Duh.. Little did I know... And (two) Special Ed math. I quickly accepted Special Ed math, he needs help desperately... So because we were going to try Special Ed math, did I want to wait until next year for testing for Learning Disabilities? I was fairly LIVID.
I sputtered, "OK, Last year I wanted math intervention, and was told he didn't qualify.... This year his math skills are abysmally poor and he more than qualifies. I feel like we've wasted a year getting a handle on this.. NOW you want to wait a year for testing? Why? So he can get THAT diagnosis just before handing him off to Middle School?"
At this point, Burp's counselor leaned forward and looked at me, "Psam. Just. Say. Yes." Little did I know, the school has stupid rules about how shit is worded. I think they try to scare you off with a question, when all you have to do is say YES, and they have to do it. I answered, "YES" and they smiled and handed me a form.

I'M SORRY. To me, asking if I want to do it now (when we're talking about the possibility of learning disabilities NOW) or wait to see how this tactic works, gives the non-verbal implication that the asker thinks we should wait..... Hmmmmmmm. Some day I will learn their dialect.

So Burp will be tested for learning disabilities. How this filters out real deficits compared to Aspie learning differences, I don't know... That's a question for his counselor to explain to me. To be honest, I don't think he has learning disabilities.... I just think he hasn't been taught in a way that makes sense to him. I've proven that in spelling, that with constant repetition he can memorize words. I just had to increase his spelling homework on this end to meet his needs.

Next on the table was Special Ed Math... Which everyone agreed Burp needs, but.... little did I know,  "special ed" math is not intended to be a core math class. Only to support a core math class. BUT.. his teacher and I felt that mainstream math is NOT the place for Burp. He needs streamlined materials laid out in a logical progression from system to system with little to no strategies taught with it. Just bare bones, "This is how it's done".. He can't handle having a plethora of tricks and strategies to work from. He gets them all confused and it takes him longer to work that out then actually doing the problem.. SO any way.. They were trying to figure out how to manage this.. Burp should not be in mainstream math any longer, AND the special ed math is working on simple addition... like 3 + 8 =..... which Burp is definitely beyond. There would be absolutely no benefit of putting him in special ed math  and keeping him in mainstream if the "support class" isn't going to address the materials of the core class. LITTLE DID I KNOW HOW FUCKING STUPID EDUCATIONAL HOOPS AND RED TAPE ARE!!!

The bottom line is that mainstream math is only keeping Burp back... so, I did the only thing I could. I asked them to not give Burp a core math class. Take him out of mainstream math. Put him in the special ed math... though I'll see how I feel about that... and LET ME HOME SCHOOL MATH. I told them I would work on the skills he should have already mastered, and hasn't by, focusing on daily comprehensive activities and only adding new procedures when he's gotten a firm grasp on the previous material. I told them I would do daily homework in math and send it to school so that they can be aware of what we are doing. I strongly feel that Burp can benefit from one on one instruction that focuses on repetition and constant comprehensive work to keep him from losing skills he has obtained. I try to do this anyway and often feel like I am fighting against classroom instruction that Burp has improperly learned.

So, for the time being... I am my son's primary math teacher. YAY??? I don't know if that should be a yay.. but I'm hopeful this will help. The goal is to get him caught up and them hopefully next year he can join mainstream math again.. 5th grade does it slightly differently, in that they break up into groups based on skill level.. SO Burp might be able to integrate that way. *fingers crossed*

Previous to the IEP meeting, I had been asking on WP what I might expect them to offer Burp and what was reasonable to ask for... and in truth, I was already considering the prospect of home schooling math.. and someone was talking about getting him an Aspie tutor in math (which I can't afford) and telling me that there are such things as charter schools for ASD kids. Two hours later, we were in the counselor's office and he told me that HE is trying to start a charter school for ASD and learning disabilities, and is just waiting for the school boards to approve his proposal. He'll know by the end of the summer if they will, and if so.. he's hoping to open doors to the school in January!
The way he explained the curriculum is:
1) an approx. 8-1 student/teacher ratio.
2) integrated classrooms based more on skill level than age..
3) logic and reason based subject matter and teaching strategies (no more multiple strategies.. no more "be creative" for kids who can't be creative)

The school would be 1st through 8th grade, with progression to 9th grade based on skill, not age. And, the only reason he's only planning to go through 8th grade is because the high schools here already have a really great autism program. He talked about sensory and de-sensory rooms... It seemed like Aspie/Autie heaven!

It's so weird to have absolutely no clue where all of this will lead us. I mean, you never know what the future may hold, but you usually have a generalize idea... I'm clueless... But, I think we've found a good starting point. I am still mildly frustrated that it took us a year to get here. I feel like no one ever admits there's a problem until I say, "HEY! WTF IS GOING ON??"

9th Planet

Someone shared this on the Parent's Forum in WP... and I thought I'd share it here... it sounds like a good thing.

http://9thplanet.org/

Things Coming Together.. and I Got a DATE!!!!

So yesterday, I finally got to see some things pay off.

Burp and I have devised a way for him to multiply, since he can't seem to remember times tables.
I give him a problem, like 3 x 8 = ?
And on his little white board, he writes the problem, then draws 8 circles.
Then inside each circle, he writes his count-by 3's.  3,6,9 etc. to fill each circle.
If he can't use the count-by's, then he can make tally marks in each circle.
Example... he has managed to memorize that 7 x 7 = 49... but has no clue what 7 x 8 is.. so he writes out
7 x 7 = 49 + and a circle that he can put 7 more tally marks in. (I picked the circle so he could get that multiplication is dealing with groups of numbers)
He seems to get this system.

I told him that I would talk to his teacher and see if he could take a white board to class. He said, "Well, mom. We have white boards... we just aren't allowed to use them all the time."
And I told him we'd get that changed. Which turned into an argument about "But it's the rules..." How do you tell your kid that an IEP means rules can be broken... without inviting a "rules don't apply to me" attitude??... So I didn't go there... I was just like, "You watch Mommy work her magic babe!"

She has agreed! She was actually very receptive to my request. Which I'm ecstatic about, but also kind of sad that he's had a white board in class all year and she never noticed that it helped him. We also vaguely talked about taking him out of main stream math. Which I'm not opposed to. I think "special ed" math isn't such a bad idea for him... or even no formal math at school, but for them to send it home and for us to do it on our own (but I don't know if they'll go for that).

Second... when I requested a new IEP meeting citing that 1) I am concerned about Burp's situation in math, and 2) I would like him to have Unscheduled sensory breaks, stating that scheduled breaks don't teach him to recognize and address when he is having stress-related issues, plus don't do anything to address the times that he really needs them. I also pointed out that I was ... unhappy.. that he got a referral for getting out of his seat and talking during a state assessment. I understand that it's against the rules.. but REALLY? That's basically giving him a referral because he's an Aspie with ADHD. He should have been sent from the room for a few minutes. Now he's terrified of getting another referral cuz he doesn't want to get expelled.... But anyway, the woman I spoke to, later found out she was the new vice principle, said that they don't really do unscheduled sensory breaks and I should feel fortunate because a lot of schools don't do any sort of sensory breaks.... I called her on her bullshit because Burp has a friend at that school that has unscheduled sensory breaks.

So I'm still waiting for that meeting to be scheduled.. But, I asked Burps teacher if he could take a coloring book to school. At home, he uses this activity as a destressor and he told me that another girl in class gets to color during free time. So I asked. AGAIN.. His teacher was super supportive. I explained to her that he had some educational coloring books in his special interest areas (hoping to deter the thought that a main stream cartoon coloring book might be disruptive to others...) and she said yes. I asked if she could make a list of the "rules" for his coloring.. when, where, etc... as I'd told him it was her classroom and she gets to make the rules.. And she said no prob... actually, she was planning to make a packet for him to keep in the hall (which is a HUGE common area with tables and such that all the classes in that wing open into) that would hold his coloring book and crayons and that he would be allowed to excuse himself when he felt overwhelmed and go out into the common area and color for a few minutes..
OMG!!!!! Sounds like an unscheduled, self-imposed sensory break to me!!

So, YAY! I can't even tell you how excited I am by these little breakthroughs.

Next, I had never thought to look for a book that explained to Burp about Asperger's. I knew there were books for me..  but him? DUH!!! I know..
So a couple of days ago I ordered a few, and the first just got here... "All Cat's Have Asperger's Syndrome". He hasn't looked at it yet, and not all of it applies to him.. but I think it will open the doorway for questions.. And questions are good.

ALSO.. my mom called me yesterday to tell me about a show that's being put on tonight at the Eugene Hult Center that is called "Land of Oz" being put on by the Bridgeway House. Apparently it's a show about autism put on by autistic children and adults from our area. I showed the Hult Center info page to Burp, and he was instantly excited.

So, I have a date with my squid tonight... He doesn't know it, but I'm going to take him to Chinese food, then we will go see Land of Oz.


Yesterday, his friend Gamerboy was over..... they were, DUH, playing video games.. But I found out from his mom that he as another special interest besides video games.... inventions. So I was looking around on line and telling the boys, "Hey, did you know that they think Einstein was autistic?", "Isaac Newton?" to which Gamerboy corrected me, "SIR Isaac Newton.. he discovered the theory of gravity......", Mozart, Emily Dickinson,  Thomas Jefferson, Michelangelo, Darwin, VINCENT VAN GOGH.. which got Burp's attention. There is this bright light that comes into Burp's eyes when he realizes that there have been very important people who had issues just like him. He seems proud and amazed. THAT is a good thing.

Anyway, I have some junk that needs to get done before my hot date tonight...
Have a GREAT DAY!!!!!!!!!!!!!!!!

Who's The Aspie?

So I have this friend. He's a very high functioning Aspie... kinda hard to get sometimes. Incredibly frustrating most of the time, but I love him to death.

So, most of our communication has been via text lately, which can be very dumbfounding as he's not always good at precisely stating his thoughts and it leaves me with a lot of guess work.

Tonight, I emailed him a link to a news story and texted him to tell him to look at it.

Me: "OMG HEY!!!!"  (you have to say something to get his attention... THEN explain yourself once you've got his attention... cuz if he thinks he might not be interested, he won't answer... not that he admits it) sooooo....

Me: "OMG HEY!!"

Several minutes later.....
Him: is 4 horses!!

Used to his broken messages, I assume he's talking horseMEN...
Me: Like Apocalypse?(You know... The Four Horsemen.......)

Several minutes later....
Him: No....... as in Hay is for Horses... doofus!"

Hmmmmmmmmmmmmmmmmm...... ??? I thought he was supposed to be the literal one! ?! ?!

Oregon ASD rate 1-in-98

So, I was talking with a friend about the fact that Oregon has one of the highest ASD rates in the nation. I did a little online research... and found some very interesting information...

Since 1992, schools have been able to assess children for autism as provided by a federal law called Individuals with Disabilities Education Act (IDEA). This assessment, though labeled the same as a medical diagnosis, is not a diagnosis. Apparently, the criteria for eligibility under this law is pretty flimsy and not as stringent as the DSM-IV's medical diagnostic criteria. Which, in itself is not a problem... The idea behind the IDEA is to identify children in trouble and address the situation (hahahaha, right). (For a better understanding, check out this article by Autism Watch)


Where this causes an issue is that for some reason when gathering state-wide statistics on autism, Oregon's school assessments are counted right in with the medical diagnoses, from what I gather, making it appear that Oregon has double or triple the average amount of ASD cases than other states. According to the Oregon Dept of Edu, 1 in 98 students suffer from ASD.(not a link to the ODE, but an article I got the info from.)

My question is, why are they gathering this information from the schools, shouldn't they be getting it from the physicians who SHOULD be doing the diagnosing?

My Letter to the First Lady....

In my life, I have written hundreds of letters to various government officials, none of which I've ever sent. That's one of my weird quirks.. I will get super involved in researching, writing, and rewriting my letter.. and fail greatly at the buying a stamp and putting it in the post.

Yay modern times and email! So here is my letter that I sent to Mrs. Obama. Click here to send your own email.

Dear Mrs Obama,

I am writing to you as I appreciate that you have used your position to directly address some of the issues impacting the youth of our nation. I know you’re busy, but I hope you have a moment for this.

My concern is our education system. I am troubled by the fact that my son, who is in the 4th grade, has never had a text book. I am sure that you are aware that there are several methods by which people learn best; some by hearing, or seeing, or doing, or a combination those processes. By eliminating text books, one of those systems is being completely eradicated. There is no copying and solving, the current system is a photocopy in which the child just fills in the blanks. This doesn’t work for all kids. Sure, most get by… but is just getting by really enough?

My son has learning disabilities. He has Asperger’s Syndrome, ADHD, and Anxiety Disorder. While the school is great in addressing his social issues, they are failing him academically. With 1 in 150 children being autistic, it seems to me that the education system would address that autistic children learn differently because their brains process information differently, therefore they must be taught differently. I am not educated as a teacher. I know this about my son, but I am not trained to address it. Without a textbook to assist in homework, I have great difficulty addressing his homework in a way that ensures continuity of information. I am amazed at the new terms and procedures that they have created to teach simple mathematical practices.

I was fairly disgusted to learn that $300 million is being allocated to restructure the standardized testing system. I understand the need for standardized testing, but the sad truth is that schools stream their curriculum to the tests, and the other things are being forgotten.

In a time of such huge financial crisis, is this the best way to spend that $300 million? How many textbooks could that money buy? How much would it cost to buy every child in America a math book? To me, this seems a much more critical issue.

I used to dream of owning my own home and getting my son a dog.

Now, I long for textbooks.

Thank you for your time,

***Psam***



OMG---- I found a typo after sending... instead of eradicated... I used irradiated. hmmmmmmm oops, no way of even pretending I meant that... infact, the absolute opposite of everything I was trying to say... damn it.

Wrong Planet

So in combing the internet looking for some clue to help my son get a grasp on his math issues, I came across an autism web-community called wrongplanet.net
They offer a forum, articles, chatting, blogging... all sorts of stuff.

Anyone who knows me well, probably knows that I'm not much for support groups, self-help, or even just talking much about my problems. I have to say, I've been part of this community for maybe a week, and already seeing changes in myself and the way I deal with Burp.

I cannot even begin to explain how much of a relief it is to hear that other people have gone through the struggles I've been, or am going, through, how they dealt with it, and, THANK GOD, that they came out on the other side. It's nice to have it stressed that NO ASD kids are alike, and therefore what works with one, won't work for another.. And though I've known there is no cure, I've always been looking for the "fix".... and there is none. I'm beginning to accept that. There are ways to help some symptoms.. but some things are just the way they are, and that's all there is to it.

It's also taught me some important truths. My son does not get social interaction. He never will really. He can be given tools to understand social cues, but he can never be made to blend socially 100%. At this point, he wants to be social. But now, he is socially oblivious, and that will change.. As he grows up, he will learn more social cues. He will pick up on the fact that other kids know he's different. He will pick up better on when kids are being mean to him and when they don't really like him. More likely than not, this will cause him stress and make him more anxious about social interactions. He will probably become antisocial to some degree. The most important thing I've learned is that this is okay.

On this forum, there are adult ASD people who give advice. It is so great to get stuff from their perspective as most ASD kids don't have the tools to explain why they do the things they do, or how they think, or anything to let the parent understand better. It's interesting to learn that really, just about every little quirk my son has is directly related to stress.

For the longest time, I could never understand how Burp could do so well at my mom's house, often not even requiring meds, yet home without meds is CHAOS. I understand it now. Everything there is pretty routine. Most deviations to that routine have their own routine. There are certain things that differ there from here... and somehow, the way those differ make it so that it's not an issue.. Burp knows he will NEVER get the tv from Papa, so he watches tv in his room.. At home, Burp will never watch tv in his room because he can usually get the tv from me. At grandma's, he has free reign when it comes to snacks and treats. Here, there are certain times that he's allowed certain treats. USUALLY, he doesn't have to do homework at grandma's, can't avoid it at home. Grandma lives in a place where he can, to a certain extent, roam free. Here he's limited spacially and has a limited number of kids to play with on an every day basis.It makes sense.

One thing that I've felt really helpful is "Congratulations! Your Child Is Strange", written by a member of the forum who has Aperger's and for several years has been offering advice to parents through the forum, and finally decided to compile some of his most commonly given advice into a book. It's a free download, check it out. Not everything applies to my son and I don't agree that all of the advice is right for us.. but it has helped immeasurably.

Anyway, I feel that I'm taking a step in the right direction and decided to share it. I hope it helps someone else out there.

Chaos!!!

I don't know if I have ever had such a deep need to blog. Of course my ability is greatly limited due to a loss in internet access at home.

My life is such chaos right now. The last week has been fairly compriable to Hell. There has also been a few shining moments.

Burp received his rank advancement in Cub Scouts and was awarded 8 belt loops. The process of getting him evaluated for Asperger's has begun, though I've recently learned that there is a difference in educational and medical diagnoses. Oh well- one thing at a time. He's started a special social skills class at school which he loves and I've been told is very successful. There are also whispers that once we get this all figured out, he's very likely on a path for Talented And Gifted. WOW!! That one caught me by surprise. I mean, I've always thought he was brilliant in his own way, but I also know parents seem to think more highly of their children than they probably should. LOL!

On the flip-side, work life has been very stressful this last week. Last Friday we were told their would be a special meeting for ED Unit Secretaries and Paramedics on Tuesday. Things at work have been slow. We've been flexing and sending people home early, so I knew this wasn't good. I had four days to stress. Tuesday we found out that they would be cutting from 6 unit secretaries, down to 4. Unfortunately, I'm number 5 on the totem pole.

There are a lot of maybes and what-if to account for. There is a chance that someone with seniority above me will not take a shift because it doesn't work with their schedule. If all the shifts are taken, I have the choice to collect a severance package, or bump someone in another department that I have seniority over.

I fall into the 4 to 6 years of employment so the severance package isn't that wonderful. Four weeks of base-pay, plus cash out my PTO at 100%, recall rights for a year, unemployment, and if I am recalled- I get to keep my severance pay. Nothing that makes you go WOW! but I have never heard of a non-management position being offered severance. So no looking the gift horse in the mouth here!! Another thing to keep in mind is that there is currently a government program that pays 65% of COBRA. For me that difference is over $600. Instead of the $937 per month it would cost me to keep insurance, it would only cost me $326. That program expires at the end of March. After that, no deal.

The other option is bumping. Really, this makes me want to vomit. This causes a huge battle between morality and ethics and survival of the fittest. If I am not offered an ED shift, I can go to HR and they will give a list of all Unit Secretary positions that are currently held by people whom I have seniority over. I can pick one and bump that person out of their shift. In turn, they can do the same thing- causing a huge trickle down effect throughout the entire hospital. I hate knowing that what I choose to do can effect the lives of countless others. Unfortunately, the truth of it all is that there is no way I can go without insurance for Burp. His medical bills would cost me over $1000 a month without insurance. *sigh* What to do?

A friend told me the other day, “You're too nice and ethical and by the book. That's why you don't get anywhere in life. You have to cheat and break the rules to succeed.” WOW.... True maybe, but I can look myself in the mirror and be happy with the kind of person I am.

To me, I'm heart-broken by all of this because I LOVE MY JOB!!! I LOVE THE COMPANY I WORK FOR!!! I (mostly) LOVE THE PEOPLE I WORK WITH!! And DAMNIT!!!, I'm damn good at my job. Not everyone can say those things. I think it's pretty damn cool that I can. Sure, I don't make enough money. I struggle. But it's worth it. I could maybe find a job that gives me more hours, but I would rather scrape by and love what I do and know that I work for a company that TRULY puts patient care first, look forward to going to work everyday, and take pride in a job well done. It makes it worth it. And I don't want to lose that.

I'm scared because the ER is the only department that has a NOC Unit Secretary. Working graveyard truly works best with my schedule. As a single parent, I don't miss anything. I sleep while he's at school and am still able to take him to Cub Scouts, Swim, Rockwall, whatever he chooses to do. He needs to do those things. Whether it is just ADHD and Anxiety Disorder and/or Asperger's, he benefits so much from those extra-curricular activities. I can't take them away from him. We spend sooo much extra time on homework. Yes, it's my job to put a roof over his head and food in his bottomless belly, but it's also my job to give him every tool possible to be successful in life. Right now, I have that balance. This is so difficult.

I do have to say, I've had so much support. The few people outside of work that I've told have been astounding. I've really not told that many people because, like.... what do you say? I don't really know anything at this point. I haven't even told my mom. I don't like to not have a plan. I don't like to worry her. I planned to sit down with her on Sunday and ask her advice, unfortunately, Ducky asked me how work was going..... and I don't lie well, so I told him. I hope you understand Mom. I've talked to a few of my close friends from our Cub Scout family, and they've been incredibly supportive. In fact, it's been difficult because we were supposed to re-bid on Thursday but some of the wave-makers at work got the re-bid date moved to Monday so on top of not getting much sleep due to meetings and such, I also got a several phone calls on Thursday asking how the bid went. Though the support helps, it sucks to have to repeat the bad news over and over.

I've planned as much as I can. I've already started inquiring about a job at the Urgent Care that our ER doctors own. I've talked to a few people in case I have to take a day job and need to arrange child care either before or after school for a little bit. I have two lined up. I'm fairly certain if I have to apply for jobs elsewhere that I can walk in there with no less than 20 reference letters. That feels good.

I've gone through the total range of emotions: hopelessness, devastation, fear, panic, frustration, anxiety, stress, you name it- I've felt it! Now I'm coming into a sense of peace. What will be, will be. Everything happens for a reason. This could really suck ass, or it could be a great opportunity. If I do keep an ER position, it's an increase in hours. If I can't, one of the people I could bump is an ICU Unit Secretary and they are required to be monitor techs... I've been requesting that training for over a year now, plus it's a higher pay scale.

I've tried my best to keep my pride and dignity about me. To take everything in stride. I know some where there's a saying about how we deal with adversity tells something about the kind of person we are.

IF

If you can keep your head when all about you
Are losing theirs and blaming it on you;
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or, being lied about, don't deal in lies,
Or, being hated, don't give way to hating,
And yet don't look too good, or talk too wise;

If you can dream – and not make dreams your master;
If you can think – and not make thoughts your aim;
If you can meet with triumph and disaster
And treat those two impostors just the same;
If you can bear to hear the truth you've spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to broken,
And stoop and build'em up with wornout tools;


If you can make one heap of all your winnings
And risk it on one turn of pitch-and toss,
And lose, and start again at your beginnings
And never breathe a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: “Hold on”;

If you can talk with crowds and keep your virtue,
Or walk with kings – nor lose the common touch;
If neither foes nor loving friends can hurt you;
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds' worth of distance run -
Yours is the Earth and everything that's in it,
And – which is more - you'll be a Man, my son!

-Rudyard Kipling

On a totally different note; today my son told me that he has a school friend whose Dad is serving in Iraq. He had asked his friend if next time he talked to his Dad if he would say “Thank you” to him, for serving our country and protecting us. WOW! I am so proud that at 8 years old he understands that. I was speechless. What a kid.

He told me that he wants to serve his country when he grows up, but that he doesn't want to go into the military because he doesn't want to go to war. So we discussed the different ways you can serve your country. He no longer wants to go into Sports Medicine when he grows up, he now wants to be a K-9 Officer. I'm pretty okay with that.

Happy Days ! ! !

I went to see the new therapist on Monday. It was amazing. He did more in 40 minutes than everyone else combined during the last 2 1/2 years.

He agreed that there was ample reason to look into the possiblity of Asperger's. THEN he told me that all I had to do was request that the school screen him for the autism spectrum. That's it. Just ask. Why has no one told me this? I have no idea if he does or doesn't have it, but that's one question that can be answered.

THEN he told me about this free service that is available to families going through this. You get a caseworker/advocate that will go with you to meetings and evaluations, help you know which questions to ask, and make sure you get answers. Free. All you have  to do is ask for it. Why didn't anyone ever tell me this?

As soon as I left his office I went to the school and requested the evaluation. Come to find out, his teacher had requested it a few days prior. Next week his case will go to committee and they will get the ball rolling. After talking to the school, I went home and called the advocate service... They said they could certainly help and I should hear back from them within the next 2 weeks. I feel like such a huge weight has been taken off of my shoulders. I will finally have direction and someone to give educated insight. Thank the gods.

This therapist seemed shocked that no one had ever sat down with me to discuss options. Apparently, the school should have discussed things like IEP's and 504's. No one discussed anything. I got a letter that said, "Your child has ADHD." That's it. The pediatrician said, "Here's meds" until the med dose got too high, then he said, "Go to the psychologist" who said "Go to the psychiatrist". I have jumped throught hoops and gone from one doctor to another, and no one ever really offered us any help. What a bunch of assholes.

Unfortunately, we don't know if Burp will get to see this new guy. We're waiting to see if the insurance accepts him. I have my fingers crossed. I really like this guy. He's not a psychiatrist, not a psychologist, just a therapist who specializes in autistic children and teaching them to cope with their "quirks". That's exactly what we need, whether Burp is autistic or not. He just needs to learn how to deal with it.

I Am SOOOOO Sick of Doctors!!!

If there is anything that stands out in my mind from college... it's the lesson that YOU are ultimately responsible for getting appropriate medical treatment. We live in a world where you're generally raised that physicians know all, know what's best for you, and you should do as they say. But the fact of the matter is, if you don't agree with your doctor it is your responsibility to do something about it.

We have been bounced around so much. When the question of Burp having ADHD came up, I went to the pediatrician who told me he had to be diagnosed through the school psychiatrist. She diagnosed him with ADHD... We messed with the meds for a year and a half until Burp was on 72 mg of Concerta and no one could tell. Every time the dose was raised, it would seem to work for a few months and then not at all.

Finally the pediatrician said he wasn't comfortable giving Burp more. He was 7, weighed 60 lbs and the doctor said that he could give him meds with the Concerta, but while he did that for high school and college kids working and going to school... he wouldn't do it for Burp. Find by me..... I'll agree with that. He recommended we see a psychologist to determine if there wasn't something else going on with Burp.

The psychologist was a nice guy. He did a HUGE assessment with Burp and decided that yes, he had ADHD, but also severe Anxiety Disorder... (I had always thought Burp had mild OCD..... which is a form of anxiety, but the doctor said Burp wasn't there... yet) We went once a week for several months. The psychologist wanted to discuss and work on some of our biggest issues.... ie. we have really rough mornings, every morning, BURP just doesn't want to get with the program. Argumentative, combative, and all around disagreeable. His opinion was that Burp was acting out due to the anxiety because he's very dependent on me, and it stressed him out that I work at night. Whatever.... his solution was that we spend the first 10 minutes of our morning playing a game or something, and then when Burp does what he's supposed to, I was to reward him with cookies. WTF?

First, I know my child. Yes, our mornings were rough... but I understand him and know how to deal with him for the most part. The rest of the world doesn't. I am more concerned that he learn how to recognize his triggers and learn how to cope with his issues so that he can get the most out of school and have a normal childhood and social life. And I think it's bullshit to bribe my child.

So the psychologist eventually suggested that Burp see a psychiatrist to possibly medicate for the anxiety. The thought presented to me was that perhaps dealing with the anxiety might make the ADHD easier to deal with.  During this whole ordeal, when I speak to the parents of other kids with "issues", everyone keeps saying, "Ohhh we went through that."  "Sounds just like my kid." "Are you sure it's not Asperger's?"

So we go to the psychiatrist. I ask, "What makes you so certain that this is ADHD and anxiety, not Asperger's? Everyone thinks he's autistic when they first meet him."
Don't ever question the professionals. "It's very apparent that your child has ADHD and anxiety... he might have Asperger's... but  there's no test for that, and no treatment. So let's treat him for what we know he has...And what makes you so sure he DOESN'T?"

Well first of all, if I were so sure he wasn't ADHD, I wouldn't keep him on the meds. I'm not sure of a fucking thing at this point. But it's obvious that the meds aren't working the way they are supposed to. Maybe he just needs a different med. I DON'T KNOW... but when the new teacher says she thought he wasn't medicated and is shocked to find out he's on 72mg, THAT SAYS SOMETHING TO ME!!! But I'm not a doctor just a stupid, single parent... what the fuck do I know?
He did opt to put Burp on 25mg of Zoloft, which I've caught a lot of flack for from the nurses I work with. But I see a huge improvement with some of his nervous habits. He doesn't tug on his shirt collars so much, or grind his teeth in his sleep as much. He doesn't obsessively tell me he loves me, sometimes as often as once or twice a minute..... which might sound like I'm a horrible mom for getting frustrated by it, but it was constant to the point of not normal. He doesn't seem so compelled to repeat himself to get the right sound to a word or phrase. He actually WANTS to go to the babysitters, even on nights I don't work. His appetite is better. He takes transition better, and we no longer fight every morning.. In fact, I can't tell you the last time we had a bad morning. And he doesn't so obsessively tell stories over and over, even though you saw or experienced the event with him. I see a vast improvement in those areas....
The psychiatrist now wants us to see a psychologist, as well, to work on those things that are so important to me. The learning to cope. Developing the skills to recognize and deal with his issues in an appropriate manner. However, I don't feel that psychologist #1 is the man for the job, though he is very nice.
So I've searched.... and finally, talking to yet another mom whose son sounds soooooo much like Burp, yet is only diagnosed with learning disorders, I was referred to a counselor whose specialty is actually autistic children. I looked him up on line, found an email, and sent him our history for the last 3 years and asked if he thought he could help. He promptly replied that he thought he could. I called him and on Monday I have an interview with him.   YAY!

However, two weeks ago Burp had an eye appointment. See, every year the school does their assessments and every year they tell me that my child is blind as a bat. I take him to the pediatric eye specialist (Burp had Strabismus when he was little ... so I just returned to the doc that did his surgery) And he tells me there isn't anything wrong with his eyes. We chalked it up to the fact that Burp has ADHD and doesn't test well. So this year was no different. The school nurse calls me up in arms, why haven't I taken care of this yet? I explain the situation to her and she demands that I have his eyes checked again, stating that she personally tested him and there were no exterior distractions and it is quite apparent that my son has horrible vision. (Though he never complains or squints or has headaches.) So I have her refer me to another eye doctor.
We go..... it is very apparent during the initial screening that Burp is faking it. THE LITTLE BUGGER WANTS GLASSES! Then we get back with the actual doctor and I try to tell her that he was faking in the other room. She very coldly told me she knows how to do her job. She continues with the evaluation and at one point has Burp jump on one foot, then draw an A with his toe on the floor. Apparently, from the confused way he preformed the tasks she was able to determine that his motor skills are developmentally slow. ... and I MUST take him to a specialist. Then she superscribed him glasses that she said would help with the eye fatigue he described getting (always on the last page of his book.) We order the glasses and as we're walking out the lady helping us gives me his prescription. Apparently I had just ordered progressive bifocals for a child with 20/25 vision. WTF? and she tells me my kid needs to see another specialist? Do I trust her opinion? Fuck no.

So today I'm sleeping, which is a miracle these days. My 28 year old neighbor died in her sleep on Friday and her 4 year old was home alone with her (though he didn't know she was dead) until nearly 11am. I think I'm having some anxiety over the whole thing. Just as I fall asleep, I feel as if I'm not breathing and startle awake, gasping for air. I'm not too concerned, I'm sure it will pass. It just makes falling asleep hard. I must have been in a fairly deep sleep when the phone rang just before noon. I looked at the ID and it was the psychiatrist calling to confirm Monday's appointment. After the call, I couldn't remember anything of the conversation, and stressed about it as I tried to go back to sleep. The psychologist is a 1:30... shrink at 4:20... But something didn't feel right.
So finally after I picked up Burp from school, I called the shrink back and explained that I work graveyard and that someone had called to confirm my appointment for Monday, but I wasn't fully awake and couldn't recall the conversation. OMG, you'd think I told her I was too busy packing my bong to pay attention to the phone call.
OB = Office Bitch
ME= duh!

OB: Do you know who called you?
ME: No, I'm sorry. Like I said, I don't remember any details of the call.
OB: Well I didn't call you.
ME: Who ever it was just wanted to confirm our next appointment, which I just want to verify is Monday at 4:20.
OB: Ok, that would have been XXX, her notes say whoever she spoke to confirmed the appointment.
ME: Yes, I'm sorry. That was me, but as I said, I was sleeping and I don't remember the conversation.
OB: But it says it was confirmed by whomever she spoke too.
ME (agitated now): I understand that. Ma'am, I work graveyard and answered the phone not fully awake and now don't recall the conversation. I just need to verify that yes, the appointment is Monday the 25th at 4:20.
OB(Very bitchy): No. It's Tuesday at 4:20.
Me: Ok, thank you very much.

I was so disgruntled that it took me a few hours to realize I would have never set an appointment for Tuesday at that time, Burp has swim then. I looked at the calender. The 25th IS Monday. I dug though my purse and FINALLY found the appointment card. The 25th at 4:20! WTF!!
This has happened before and we've only been going there once a month for, this will be, 4 months. And last time I called because the appointment card said a day and a date that didn't match. The date was a Monday, but Tuesday was written on the card. They clarified that they had us set for a Tuesday appointment, and I rescheduled, but the next appointment we went to the doctor had us written down for a no-call, no-show. I've freaking had it!

I'm getting Burp a new shrink. And no one is allowed to diagnose him with something new unless they have addressed something old! I'm not putting up with anymore shit from anyone. If I don't like you, or your bitchy, pippy-twat incompetent staff, I'm done with you!

Enough is enough already.

Welcome to the World of Weird

I get Burp from the sitter this morning and ask, "What do you want for breakfast?"
He doesn't even have to think. "A granola bar, banana, carrot - big not babies, and an apple. I wish we had frozen peas."
What mom has to limit her kid's fruits and veggies? Me...
"No, how about some protein.... can we at least add peanut butter in there?"
We wheel and deal.
He finally agrees to a peanut butter and banana sandwich, a carrot, and an apple... and a granola bar- if he's still hungry.

He only got through the sandwich and carrot.

Yesterday was a plate of apple slices, carrot sticks, and celery sticks, all of which he liberally dipped in peanut butter.

The psychologist wants him to have a high protein breakfast. I've tried eggs and sausage, which he loved for the first week.... then refused to eat after that.  He won't eat cereal. I even broke down and got him Lucky Charms... which he ate once. (I know it's not high protein, but with his ADHD meds it's pretty much a given that he won't eat much of lunch... and the boy is skin and bones. He's gotta eat breakfast.) The only breakfast I can get him to eat without a fight is bagels and fruits and veggies... Thank god he loves peanut butter - or I'd be totally screwed.

It may not be HIGH protein, but at least it's SOME protein.

*sigh*