Come here often?

It's been way too long since I've posted, but we've been having some slightly bizarre illness happening here.  Very high fevers and random barfing.  No other complaints, just hot n barfy. 
Anyway..
Jaysen's surgery went very well.  Thank you all for your well wishes!The procedure was a bit more involved than originally anticipated, but the surgeon was able to complete it without complication. 

Jaysen was really nervous- and by nervous, I mean he was scared out of his everlovin' mind...but once in the room, they did a good job of relaxing him (read: drugs), and it was over in a jiffy.

Going..........

........and gone.

So freakin' cute.
Recovery on the other hand....notsomuch.
Apparently, my lil guy doesn't come out of anesthesia too well.  He was really crotchety, and in a significant amount of pain.  They gave him half a vicodin, and it wasn't long before I was pushing for them to give him the other half.  The nurse was from the school of start small and increase doseage only if absolutely necessary.  Mama has had a few surgeries in the not so distant past, and is from the school of the patient should be KTFO (knocked the fuck out) the day of and the day following surgery.  Then, painkillers should be administered as necessary.



KTFO.



Add in a reaction to one of the medications and some unexplained chronic barfing....it was a rough few days there. 

New belly button under construction:

The kid is tough.

I heart lampposts

Finally.

I was given the opportunity to review a film called Loving Lampposts: Living Autistic.  Todd Drezner takes an interesting, and refreshing approach to gain knowledge about his son's diagnosis.  I say refreshing, because this is honestly the first time I have ever seen the topic presented in a 100% unbiased, non-judgemental, and eyes fully open approach.  Drezner spends time seeking knowledge from both "recovery" and "neurodiversity" movements, presenting both sides equally, and straightforward.  And neither side presented Autism as a devastating apocalyptic disease that steals your children's souls. 

This is a really good film, peeps.
The title is personal, and reflects Drezner's son's special interest in lampposts, and his affinity for them.
It's personal and heartfelt.  The parents in this film have so much love for their children. 
I would be willing to bet there are a lot of newly-diagnosed parents out there, whom would feel much comfort and support from just this knowledge alone.  Why?  Well sure, because it has Estee and Kristina in it :), but also because it presents options.  As parents, we love options.  We may have a strong feeling toward a certain side, but as long as that option is there...we are hopeful.

Not to mention the kids in the film are downright adorable.
I think this film should be stockpiled and handed out to parents of newly diagnosed kids.
It's that good.  And that informative.
Really- that's what our goal is as parents.  We just want to make the best decisions for our children, and the way to do that is to make informed decisions.

Lampposts.
Love em.

**UPDATED**  I have received a few inquiries as to how people can obtain a copy of the DVD of their own.  I was given the following information from Cinema Libre:

For people who are interested in purchasing the DVD for private use, they can go to our website.  Here is the link - http://store.cinemalibrestore.com/lovinglamppostsdvd.html.

For people who are interested in screenings or the educational DVD, they can also visit our website – http://www.cinemalibrestore.com/educational_grassroots.html

If they have questions they can contact sales@cinemalibrestudio.com


Disclaimer: I did not receive compensation for this review.  Should anyone feel compelled to compensate me, feel free.  I would love an alpaca, or perhaps a nice garden gnome.

And lastly, this...

To catch up, part one and part two.

Thank you, everyone, for your words of comfort and support.  They really mean a lot to me.
It seems that since my freakin' fire 2 years ago, I've been hit with a barrage of crap that just has no end.  It sucks, and it is affecting me.  To know that you all are out there helps ease the crappityness of it.  So thank you.

We met with the surgeon, and apparently this is a congenital defect (because everyone needs more of that dontchaknow), and it's extremely rare.  Like less than 1% of the population has this thing kickin'.  And of course, it would happen to us.  Anyway, as it stands now, we have to wait for the infection to clear up, and surgery for excision of urachal cyst is scheduled for May 19th.  I have not told Jaysen yet, and don't plan on doing so until maybe the week of.  When I tell him, he's going to flip.  But he'll pull through, just like he did at the hospital.  I am amazed at how far he has come.  How tough he has gotten.  He is now taking 3 pills 2 of which are full sized antibiotics.  That is huge for my sensory defensive kid.  Huge. 

On a side note, I was at the Metro Parent Living With Autism seminar yesterday.  It was pretty cool.  You could just feel the love in some of those presentations.  It really warmed my heart.  I also met some cool people- Melissa Hunt-Sampey and I connected on Twitter, then she magically stopped following me later that day. Was it me?  I don't know, probably.  I met and had lunch with Staci Bockmann from My Great Kid, and I really enjoyed and found motivation in hearing how her son has blossomed in theater.  And reconnected with behavior consultant Aubry Dodge, whom I absolutely luuuuurve.  She is awesome.  I've blogged about her here, but used the pseudonym "Audrey", 'cuz I'm ultra creative like that.  Aside from the vendor who told me I must not like Jenny McCarthy because I'm jealous of her money and fame (yes, really), it was a good time.

So, that's the update. 

And also this...

I received a phone call from the doctor at the hospital last evening. 
Culture came back, and Jaysen needs a surgery consult first thing this morning.  They wanted us in last evening, but I physically couldn't get him there before they closed.

Having trouble figuring out how this went from here are some antibiotics, call us if he doesn't get better to we have to get him in to see a surgeon immediately.

Am freaking out slightly.
And by slightly, I mean ohmyfreakingawd what the hello kitty is going on?
Spaztronic style.

And then there's that...

...now with more RAGEFACE.

For the past couple days, Jaysen's been complaining of a stomach ache.  Dr. appt stated a urinary tract infection. 
Y'know that "mom-voice" that says really, I'm sure that's a lovely diagnosis, but I just don't think that's what's going on here... The one that gets you labeled as "combative" and "non-compliant"?  Yeah, well we get it for a reason, doktorz.
However, I accepted the dx under the promise they would get back with me once the culture came back from the lab. 

Saturday, we spent the night in the hospital.

When I went to pick the kids up from Companion's house (note to self: Companion possibly needs a new moniker), Jaysen was still complaining his stomach hurt, and his belly button was "dirty".  Upon inspection, the "dirt" was crusty something.  Further inspection revealed that the crusties were pus.  Lovely.

So I called the doctor again, who referred us to the outpatient pediatric clinic.
Dr. at the clinic swabbed his navel, handed the culture to me, and told us to immediately go to ER.
Whaaaaat? 
"Emergency Room" and "Immediately" are words that when used together, automatically induce terror in a parent's heart.

So we went to Emergency.  Immediately.

The doctors there were awesome. 
They were efficient, informative, and let me know every little process they were considering.  They involved me from the get go.  They understood what it meant, the issues that Jaysen's ASD may present- they explained a procedure to me, and hung back while I explained it to Jaysen (and subsequently calmed him from the freakout trigger words "needle" and "medicine"). 
They understood about processing time, and respected that.  They asked my opinion on what the best approach would be for them to get what they needed.  They took their time to explain procedures further, in steps, so I could present it to him like that.  They.were.awesome. 

And Jaysen did an awesome job of letting the doctors know where his abdomen hurt and where it didn't.  He followed directions, and responded to the questions asked of him (in his Jaysen-speak).  He toughed it out and allowed them to examine him even when it was uncomfortable, even painful for him.  Fear is a powerful sedative when it comes to Jaysen.

He was terrified of getting an IV, but he didn't try to punch the tech. 
I almost did, however, because he was one of those who have to "dig around" for the vein once inside.  Asshole.

I waited for Jaysen's adrenaline RAGEFACE to subside, and explained to him that this was where they would put any medicine he would have to take, and that was uber-cool because he wouldn't have to swallow any meds.  He was unimpressed, until the nurse was fussing around and I told him she just gave him meds, and he didn't even know it.  Then, it was kinda cool, and he wanted me to take pictures of the IV.

They wanted a CT scan.
Problem with a CT scan (besides the pesky radiation), is you have to drink this apparently nasty contrast liquid. 
And no, putting it in apple juice doesn't make it any better.

Jaysen barfed it up. Twice.
They ended up putting contrast in his IV.
I asked about mild sedation- the doctor said "I figured you could go in there if you wanted to, I don't think he'll need sedation- you have a strong connection and work very well with him.  It's really cool to see.  I think he'll be fine with you there."
Aww!  Thanks doc.  I was meaning for me. 
But he did do fine during the scan.  I did too.

So....what's up with my crazy kid?
The official diagnosis is urachal remnant.  And cellulitis.
The cellulitis is no biggie, but the urachal remnant part sounds tweakish.
Apparently, this is a congenital defect where the tract going from the bladder to the belly button does not close completely after birth.
It's this semi-open tract, that became infected.
We caught it early enough that it wasn't a deep infection, so that was good.
But it can be recurring, and if left untreated, is bad news bears.

Butchaknow what?  I am so super proud of him.
He may not have been the bravest at first, but he followed mad directions, even in spite of his sensory issues and fear.  He was a trooper at drinking his "stinky juice", and is swallowing his big antibiotic horse pills. Those are both little victories for him. 
Actually, they're pretty huge.

And I am probably going to hell, but I love that last picture...

Skillz with pillz

Against my better judgement, I am totally going to post some superfantabulous news, about a superfantabulous gain we have made.

Hold onto your stickybuns, because this is HUGE.

So, you know my son...the one with sensory issues, who only eats things that he deems non-vomit-inducing? Okay, and we also know his sensory issues cross over into medications. No oral medications (makes him all barf-o-rama), has resulted in M-tabs and suppositories.

Jaysen was off meds for about a month. He started to get tweaky, so we revisited the med route. Upon familial suggestion (don't you just lurve that?!?), we tried Intuniv. Don't try this at home folks...my kid was berzerker. Like not a funny hyper berzerker... mean joe green berzerker. After only 4 days, we switched him to Abilify. Muuuuch better.

Huh?
What's that? Abilify comes in pill form?
Yes..... I know.

I had been prepping him for the meds... up until now, I had been able to successfully sneak him the Risperdal, but I wanted him to be informed as to what was going on and why he was taking these medications. Of course he bucked, but when I explained that the med was to help him not be so angry, and he might like how it makes him feel balanced, he said he would try it.

We spent the night before practicing swallowing pills using Skittles.
He thought it was funny and was really proud he could do it.

When it came time to "go live"....
Went without a hitch.
Perfect.
He even made a big production out of it.

If that's not awesome in its own right, here's what he said to me at bedtime-
"Mom...thank you for practicing me the Skittles...it helped awesome."

And now... he has taken it every day, on his own (with parental supervision).

*still holding*

Just a quick blurb here...more like a rant really...

I have to say that it irritates me to no end when people know Jaysen is med-free, and any little behavioral glitch (or big one), the first thing out of their mouths is, "time to go back on meds?"

Really?
Because had you not known he was off meds, you would have thought he was just having a "rough day". But when he's off meds, we almost look for things to go wrong. We want to find them and blame them on something. If it's worse off meds, then it can be fixed by meds, and if meds can fix him....
If you really paid attention to him closely, and not just when he is off of the meds- you would notice that the behaviors and attitudes that are so glaringly obvious to you now? He was doing 2-3 weeks ago. A month ago. Last year. On meds.
So, no.

I will, however, be revisiting the issue with his psychiatrist- who by the way, isn't you... to discuss his medication situation.

Thank you, Detroit.

*holding my breath*

Because we all know I just miss the Mom of the Year award by thismuch every year...

I was noticing Jaysen was running low on his meds. And by running low, I mean holy shit-potatoes Batman, I should have refilled this 3 days ago. So I jet on over to the pharmacy. As I was entering the store, something made me look down. Know what I saw???

-NO REFILLS-

Oh my effing Buddha burrito.
You've GOT to be shitting me.
Nope. Not shitting me.

Okay. I can handle this. Let's think. Yeah, wake up other half of brain...
Rational Me: Ohai! I'm here.
Me: Kay. I totally need you. Jaysen's outta meds. His behavior has been really tweaky lately- which means possibly, there needs to be a med re-eval. Possibly a different med? Maybe we should just see how he does off of them?
RM: Are. You. Kidding. Me? Don't you remember the last time you did this, and he was bonkers? Hyper like a spider monkey washing down crack with a Mountain Dew? Hyper like stayed up all night? Hyper like pulling couch cushions off constantly, and nobody had anywhere to sit?
Me: Yeah, but he's got one pill left... I could split it and get one day out of it...
RM: Or... you could call the doctor to call in a week's worth until you can get him in.
Me: But the weight gain and blood draws...
RM: The physical aggression... he's big now. That punch would hurt. For real.
Me: ...yeah... Okay, I'll give it a few days and really watch him.
RM: Oy...

So... we're on day 4 of no meds.
I can report that there is little to no difference.
I can also report that there have been some instances where he would usually "go off", and he has started to, but then walked away, and returned calmer.

Example: He was playing a video game that was frustrating him. He did some self harming, hitting and biting (keep in mind he was doing these sib's prior to no meds), but then he got up from the game, went outside and got the mail from the mailbox, came back in the house, and turned off the game, and watched TV instead.

*blink blink* I know.

Another example? I received word from Jaysen's camp counselor that while at the park... "Jaysen was threatened by another (non-camper) boy. Jaysen handled the situation wonderfully."

*huge proud cheesy grin*

Keep him in your thoughts as we fare through this interesting trial!

Vote! Vote! Vote!

The Friendship Circle is a wonderful organization.
My son receives services from there- his mentor? Friendship Circle.
Recently acquired bubble-tube? Friendship Circle.
Sensory rooms for drop in? Friendship Circle.
Social skill groups? Friendship Circle.
Place of 100% acceptance? Friendship Circle.

They offer so many services, for kids of all ages and abilities- they even have services for non-disabled siblings. It's difficult to even begin to tell you how awesome this place is.

Here's a link the their website so you can see their awesomeness: Friendship Circle

And now... the Friendship Circle is in a contest to will big buckeroos from Chase Bank.
Please go here and help them win! Voting ends January 22, so go there now. Now! :)

Jaysen, and all of the other kids that benefit from this wonderful place, thank you!

When life gives you lemons... stick 'em in your eyes.

The adventure continues.

I stopped the Metformin (glucophage), and Jaysen's behavior improved for 3 days. He's now back to the evilness. I called the psych and reported that the Metformin just isn't working for him, and she prescribed Topamax.

So I started researching.

And I didn't like what I was finding.

Realizing that the internet can be a scary place when you're looking up medical conditions and medications- I only have a headache, do you really think it's a brain aneurysm??? I decided to confer with my friendly neighborhood pharmacist.

She basically confirmed everything I had read.

Topamax is often called "Stupidmax" or "Dopamax", due to its tendency to impair cognitive function. It not only makes you reeeeally sleepy, but many people report lessened cognitive awareness, and even jamais vu, which let me tell you peeps, is some scary shiz.

WTF? Seriously? I'm supposed to give my kid a med that would not only zombify him, but make him not remember family members or everyday tasks? I don't think so.

But-

The pharmacist did say there is a not-very-well known liquid form of Metformin, and I should totally ask his psych about it, because that's what he really should be on. So I did. And she agreed. I pick it up today, so I don't yet know if we will be experiencing the butt-splosions again or not.

Wish us luck.

In other news, I received an awesome award from Shea's Mom, whose blog is not only full of teh awesome, but her son is just adorable and I want to squeeze him- which he'd probably hate. And I wouldn't care because he's that cute. Seriously.

So here it is... The Lemonade Stand award!

Apparently, Shea's Mom thinks I make the best out of craptastic situations- Which is cool because it's proof that my "game face" rawks.

Thank you Shea's Mom!

Now...I am supposed to send this award to 10 people, but in true fashion of The Quirk Factor here, I am going to have to decline on this one.
The truth is, I just can't handle it right now.
There is far too much crapola going on right now, that I can barely think straight.
I guess that makes me unworthy of the award, but too late, it's already miiiine!

So I'm going to pass the award along as a free for all- I do think all of you are deserving, so here it is if you would like it!

I have lemons.
This time I'm not making lemonade, I'm just gonna stick 'em in my eyes.

The Hulk, Oscar the Grouch, and Jaysen...

Been awhile... anyone still there?

To say the least, it's been a rough few weeks. And by rough, I mean holyfuckcrap what the hell is going on with my kid?!?

The aggression? Oh, it's back. It's Back In Black, baby.
Jaysen's physical targeting has returned, as well as some awesome new verbal aggressions such as these lovelies:

"I hate you." A classic staple.

"How would you like to shake hands...with a knife?" A creative spin- points for originality.

and the ever-alarming "I hope you get into a car accident and die."

I have been a total basket case.
Yes, more than usual...
We've ventured into the land of aggression and agitation before, so the actual reappearance wasn't all that eye popping. That being said, the difference is that usually I know why his aggression is coming out. I may not be able to justify or condone the behavior, but at least I understand why, in his little mind, he is doing it. Not so this time.

Jaysen can be sweet as pie one minute, and turn into a flesh eating, rabid, Valkyrie the next. He's mean to everyone. He's been pulled out of the Gen.Ed class at school, and placed in the Resource Room 100% again. He's been "physically managed" again. Oh gawd, if you remember that great debacle.

Punishment- does not work. At least not for more than a day.

I've tried to track everything from time of day to what color his shirt is, trying to find some kind of correlation- but there just isn't one. At least not that I can put together. The only thing that's changed was his new med.

When we were at the psychiatrist, I remember reporting that he still gets agitated and his frustration is high, but I don't remember reporting any increased aggression. So, I pulled him off of the glucophage.

I'm not saying the glucophage made him a monster, but it did do nasty things to his insides, and maybe constant stomach aches is a reason for the aggression. I don't know.

I'm feeling like I'm at the point where I really am going to lose it.
Support? Minimal.
Stress? I have so much I could use it to stuff my bra.
Y'know, if my boobs weren't large and in charge already.
I'm tired. And sad. And concerned.

Crap. No pun intended.

Jaysen had his med review with the psychiatrist last week.
I've been trippin' balls since.

He's gained a lot of weight from the Risperdal, but has really packed on the poundage the last couple months. To the point that people that are close to him, are starting to say some not-so-nice things about him.

His psych noticed too.
When he first went on the Risperdal, she explained the weight gain, and the risk of developing diabetes due to the weight gain.

Well...
Now Jaysen's on another med to help his body produce the insulin that the Risperdal is inhibiting. I know nothing of this med, other than it's called Glucophage, and it gives the unlucky ingester horrible diarrhea. And when I say horrible diarrhea, I mean liquid shooting out of your ass, spraying the back of the toilet every 20 minutes. Yeah, that bad. And I'm only giving him half of the prescribed dose.

Getting him to take it is another horror story, as he's just found me out. It only comes in pill form, and these are huge muthahumpin pills, peeps- so I've been crushing it and putting it in his juice. The crushed pill has to further be dissolved in hot water, leaving the result a very milky white liquid. Not easy to cover up in thin juices, so I've been using Sunny D. That shit'll mask anything.

Not anymore. I may have lost Sunny D to my neophobe. Dammit.
I tried to pawn it off that the dishwasher must not have rinsed the soap out of the glass, but he wasn't buying it. Smart kid.

So- I'm freaking out yet again.
I think I spend more time freaking out than not, so I'm not going to fight it and just hope that dark circles and perma-bags under the eyes come into style soon.
I don't know what to do.

Should I keep torturing the poor child with the firey ass explosions?
Should I take him off of it and severely limit his dietary intake? I mean the kid barely eats outside of his "safe foods" as it is.
Should I take him off the Risperdal and just deal with the Tasmanian Devil-Child?
Should I try a totally different med and play the chill my kid out, but don't make him a zombie game?

Has anyone had any experience with Glucophage and the exploding asshole of doom?
Does it stop? Ever?

This sucks.
I am dying inside with worry about my son's insulin and glucose levels.
Is this the time to freak out? Because I am really not in a very good place right now.

Is that an ass on your head, or just a hat?

We're still sick. Allus.

Although my rockin' Mother's Day was a nice diversion from our family's misery, the crappiness is stalwart, and we were forced to seek medical attention.

The adults are hacking up things that could be sold as appetizers in some countries.

Jaysen is hacking, feverish, runny nose, crusty cracked corners of the mouth, and intermittently puking.

Rylan is hacking and has so much snot running out of his nose holes, his face looks like a glazed donut. He also has red eyes because he wipes said "glaze" from nose to eyes. Loverly.

This brought us to:

The World's crappiest doctor's appointment!

The pediatricians office we go to has a bunch of really cool doctors, and a couple of them that I really don't care for. So, it just figures that the only appointment available was with a doctor that I'm not particularly fond of. When you're limited on time, you don't have much choice. We took the appointment.

Here's the words of wisdom from Dr. Asshat:

Rylan- He has fluid behind both ears.

Could clear up on its own, or turn into double ear infection.

Come back in a few days if he doesn't get better.

Seriously? Okay, because we've already been sick for a week, assblaster.

Jaysen- He has bronchitis.

We should get a blood test though, to rule out anything like infection.

(Crap... I promised Jaysen no medicine, finger-pokes, or shots.)

Much screaming ensued, but the nurse was able to indeed prick his finger to get a blood droplet. My kid thought he was dying, people. The look on his face would be the look I would expect to see on a person's face as they are watching a serial killer disembowel them.

Think I'm exaggerating?

Here's a picture Jaysen drew of the experience.

Terror, friends.

To make a long story shorter, he put Jaysen on an antibiotic for the bronchitis.
Me: Does Zithromax come in a suppository? He can't take oral meds.
Doc: No.
Me: Okay... is there something else you can give him? He can't take oral meds.
Doc: No. Just hide it in pudding.
Me: He can't eat pudding.
Doc: Put it in applesauce.
Me: He can't eat applesauce. He gags. He can't take oral meds because of his sensory issues.
Doc: Well, you'll have to find something he will eat and put it in that.
Me: (aware Momzilla is trying to escape) He just can't take 'em. There has to be something else you can give him.
Doc: I can give him a shot.
Me: Okay. Give him the shot.
Doc: Well, it's not a shot of the same thing, and it's not something we give for bronchitis. Ever.
Me: *blink blink* Um, then why would you bring it up as an option?
Doc: Zithromax liquid is the only thing I'm giving him. I don't know what to tell you.
Me: (gritting my teeth) Just give me the script. I'll try it and call you if it doesn't work.

Long story short, it didn't work.

I called Dr. Asshat back and was told there is nothing they can do for us.
Me: So, what you're telling me is I just have to let my child walk around with Bronchitis?
Nurse: If he won't take the meds, you may have to take him to the hospital for IV therapy.
Me: Fine.

Fan-flippin-tastic.

*begin non-denominational prayer*

I called the compound pharmacy.

Their staff was awesome. They didn't know if they would be able to make a suppository, but they were willing to check their database. If their database had a formula, they could do it.

They Have A Formula!

All they need is a script from Dr. Asshat, and I can pick up the butt bullets this evening!
Oh snap. Dr. Asshat is, well... an asshat.

Nurse: Dr. Asshat already wrote a script for zithromax.
Me: I know. I need this script to go to a compound pharmacy. They're able to make a suppository.
Nurse: Why would you have it filled at Rite Aid for an oral med if you knew your son wouldn't take it?
Me: (Are you kidding me?) Because Dr. Asshat told me there was nothing else he could do.
Nurse: So now you want him to write another script?
Me: Yes.
Nurse: I'll have to talk to him. I don't think he'll write another one since you filled the first one.
Me: Ohmigod. Are you crappin' serious? I filled it because you people don't listen!
Why do I have to remind everyone in the whole office that Jaysen has ASD? That he has sensory issues that impair his ability to tolerate certain things? That you can't give conventional treatments to an a-typical kid? Why am I explaining this to people who have been his primary care physicians for all 7 years of his life? I want this script faxed to the compound pharmacy and you tell Dr. Asshat to call me if there is a problem.
Nurse: Sigh... okay, I'll pass that on.

You do that, biatch.

Ugh. I'm so flippin' irritated.
I haven't heard from anyone yet, so my only hope is that these suppositories will be at the ready when I drive out to BFE to pick them up. Not to mention that the compound pharmacy doesn't take insurance, but this is my son's health, y'know?!?


I hope Dr. Asshat chokes on a tube sock.

Put your hands in mine.

Okay, so my new strategy to introduce new foods to Jaysen?
Yeah, not working so far.
It seems either there is no motivation enticing enough to battle that demon, or the sucka punk outsmarts me.
Drat.

We've also had some regressions-
He hasn't taken a tape to school in a couple months. We return from break, and he suddenly can't go to school without one. I semi-expected that, so I'm not freaking out, but Thursday he tried dragging his suitcase full of tapes to school. I put the kibosh on that plan and allowed him to take two with him. He conceded, but the last thing he said to me as the school bus doors shut, was "I hate you".

He also has displayed some strange behavior. Yes, stranger than usual.
Jaysen often gets frustrated- usually when he's doing something that doesn't go according to his plan, especially computer games. He gets frustrated to the point of self-harming. It's gotten to the point that he has a choice to calm down, or he has to turn the computer off.
He will sometimes choose to turn the computer off, so it reinforces my belief that he sometimes needs it to be okay to stop what he's doing.

Lately, he has been so not in control that he will be at the point of screaming, pounding his fists into his head, red-faced, and tell me he can't stop because his hands won't let him.

The first time he told me this, I was really pissed. I told him he will stop, and I turned the computer off. Meltdown.

The next time he became frustrated to that point, he was bawling, and started yelling at his hands.
"Hands! Stop!" "Stop it hands!"
He was crying so hard, and kept screaming that they wouldn't listen.
I asked if he wanted me to make his hands stop.
He said yes.
I took his hands in mine, said some mumbo jumbo, and voila! Made them stop. He took a deep breath and thanked me.
Strange yes, but everything was fine after that.

This last time, same thing, except my magical hand-stopping powers didn't work.
He stopped for a minute, then said "Oh no! They won't stop!"
I suggested he sit on them.
He did.
A few seconds later, he cried that they were lifting him up from the chair.

He tried to "stop his hands" by banging them on the corner of the desk, digging his nails into the backs of them, and biting them. Biting them!

I am at a loss.

I don't know what's going on, but I do know that frustration is something that Jaysen cannot yet control.

On another note-
Tonight, he told me "there are a million people in here" (pointing to his head).
With my most nonchalant tone of voice, I asked him who they were.
"They're all Jaysen's. There's a hundred million Jaysen's in there."
"Oh? What do they do?"
"They work all night. They work hard... day and night."
"Do they help you?"
"Yep."
Um... okay, as long as they're helpful, I won't freak?

I know he's trying to tell me something, maybe explain what Autism's like?
We've been discussing Autism more lately, because I eventually want Jaysen to be at the point where he will be able to effectively self-advocate.
Maybe he's starting to process our discussions?

Has anyone else ever experienced things like these?

This is me.
Not freaking out.
Yet.

Koopas, Goombas, Bowser, and Food.

What do they have in common?
They are all heinous enemies, which should be vanquished from the face of the earth.

Jaysen's latest obsession with Mario still holds strong, and has expanded to include playing Mario on the Wii for hours at a time. Despite his frustration with the games, he would play from the time he woke up 'til the time I forced him into bed.

I have tried using a super-cool new visual timer to limit his game play, but as soon as the timer went off, he would perseverate "Can I play the Wii now? Can I play it now? How about now? How many more minutes?" etc, driving me batshit crazy.

Hence the new strategy.

I discussed the new strategy with Jaysen last night, and he's game (pun intended) for it. It involves his consumption of food, which has always been a struggle with him. I explained that he will be able to "earn" Wii time for the consumption of either healthy, or new, foods. He smiled and immediately wanted to make a chart. I told him I would think about how to devise such a chart (since he tends to outsmart me on these things, being the ultimate "loophole finder").

His suggestion was to make a chart with G, M, G, M, G, M, G, M.
Grape, milk, grape, milk, grape, milk, grape, milk.
Foods that he will tolerate in such desperate times.
Umm... no.
I explained that he will not earn Wii time by eating a taste of foods that have already passed into the "yellow zone" of not-desired-but-tolerable-at-times.

He can, however, earn time by:
1. Eating a serving of a "yellow zone" food, such as a half of an apple, or a small bowl of grapes.
2. Consuming a taste of a "new food" or a food which currently resides in the to-be-avoided-at-all-cost "red zone". Such as a bite of broccoli, or bite of chicken not in nugget form.

I know there will have to be some tweaking to the plan such as deciding exactly how big a "bite" actually is, or if a "taste" must involve the actual swallowing of offending item. I will have to make on the spot decisions according to the intensity of his actions concerning this. I can usually tell just how far I can push the limits by watching his reaction to things. Hmm... that bite of carrot was itty-bitty, but he's not red-faced and drooling? Try a bigger bite, buddy. Bite of mashed potato making him gag? Possible vomitorium eruptus approaching? That was a great try, and you may spit it out.

I have yet to determine how much time will be awarded to successful foodin', because as I have said, he has found loopholes in what I had thought were iron clad plans before. I don't know if I should even specify an amount of time. Just set the timer for 15-30 min depending on the amount and undesirability of the foods he did eat. I'll have to think about this one.

If all else fails, I'm sending him to Maddy.

Autism Center

This evening, Audrey from a local Autism Center is coming out to talk to me about services they may have available to Jaysen. I was hesitant at first, because so many of the "programs" out there are either just so off the wall that I can't justify subjecting my child to them, or they're so expensive that they're just plain unattainable. I'll have to see what she suggests.

This place seems cool though. She met with my family and we discussed our concerns with Jaysen. My concerns, of course, were different than the concerns of my parents, but every concern was legitimate, and every concern was addressed.

The main one was behavior. I am able to explain (not condone) most of Jaysen's behavior, especially the perceived negative ones. This woman understood. She not only understood, but she was able to confirm my justifications, and supplement them to my parents. Very important because it's always a good thing to have a "professional" backing you up in my family. She also observed him for a half day at school, and a half day at home. Although he was a perfect angel, she said she had some good observations.

For the past couple of weeks, I was supposed to have been collecting data on Jaysen and his negative behaviors. Yeah- supposed to have been. I haven't exactly done that due to the time constraints of daily life. There was his project, Thanksgiving, this, and of course that, and where did I put that tracking chart... you get the idea. I'm hoping we'll be able to make do without it.

The plus side is Audrey really seems to like us. Which is cool because I really liked her too. Like, I want to hang out with her and have coffee. The "interview" and observation was supposed to cost $250. I was able to receive a $200 scholarship, which left a $50 balance. I was cool with that. Audrey talked to her supervisor about me and somehow had the $50 balance waived! Love. this. woman.

She gushed about how awesome Jaysen was when she observed him, told me some of the things he did that impressed her, and most importantly, she "gets" my kid, and I got nothin' but love for people who can do that so effortlessly.

So, I'm curious as to what will go on tonight- if it will be a cornucopia of options, or if she will turn into Audrey-the-dream-crusher and demand a million dollars for an experimental treatment that just may make my son grow another head. Hey- maybe that one would eat?

I also have a surprise party for my friend 'Toya tonight. If it goes horribly wrong with Audrey, I can always sail with The Captain.

At the moment...

Hi there. Remember me?
I'm back- at least for the moment.
Things with Jaysen seem to be status quo- which is erratic at best lately.

We have an appointment with his psychiatrist today though. she'll probably want to tweak his meds, which I have been opposed to in the past, but maybe that's not such a bad thing at the moment. I've been apprehensive about it in the past because with an increase in meds, comes an increase in tics. Although the tics are "harmless" in and of themselves, they bother Jaysen, and attract attention. People either think he's doing them on purpose, or think he's weird. Weirder than usual. Which causes his anxiety to raise, and well... let's just say it's just not on our top ten list of party games.

I still haven't been able to figure out what's going on with him. I know one issue he has is with his Nintendo DS. Blasted thing. The boy loves to play his DS, but because he's a perfectionist (when he hyperfocuses), when something doesn't go according to his plan in a game, he loses it. His frustration hits so fast and so furiously, that he's taken to self harming, and that's difficult for any parent to watch. It's easier for me to explain that he needs that proprioceptive feedback to help him regulate, but honestly, I'm not sure that's it. I had similar experiences as a kid myself. He needs help replacing those negative behaviors with more appropriate ones, and needs a lot of help learning how to regulate, but he's just not receptive to anything we've tried.

He's also been mean. Just plain 'ol mean. You can't talk to him without him screaming in your face, calling names and slamming things around. "Get me this" "You're stoopid!" "I SAID..." "Get away from me now!" are just a few of the gems that are repeated at liberty. He's also taken to breaking things. Mostly his things, but then he gets upset later when they're broken.

In school, they can't get him to focus on anything. As soon as they present anything academic to him, no matter how "fun" it is, he's Houdini-ing out of it. If he's in Gen.Ed and it's time to do a task, he says "I'm outta here" and walks down to the Resource Room. In the Resource Room, they present him with the same task (to show him he can't just get out of it by leaving the room), and he says "I'm going back to class", and walks back to his room. Back and forth, back and forth, back and forth. The most enticing reward is no match for The Will of my child. Riiiiiing! Oh? The school bell? School's over for the day and all he did was walk the halls? Again? Fantabulous.

Specials are no better. He liked P.E. last year (awesome teacher), hates it this year. Won't even go in the gym. Always hated music- understandable, and a lot of his classmates don't like it either. Art? If he goes in the room at all, he'll only stay long enough to do his project, then bolt.

The Team has been wonderful- they're in constant contact with me, and always ask my input. So much so, I am officially out. of. ideas. Totally. The creativity well is dry. Behavior plans haven't worked for him because it's so difficult to find a motivator. And, that baited hook is only good for one catch. What was motivating yesterday is not motivating today. That goes for home as well as school. Having an "on deck" motivator is one answer, however, there are so few things that Jaysen finds enticing enough to actually cooperate, that it's practically impossible to remain one step ahead.

He says things are "hard" or "boring", but he's using those words to simply say "I don't want to". Pairing him with a buddy hasn't helped- he's in a program called LINKS (non-disabled peer volunteers are buddied up with students for support in any area they need). Jaysen's Link program is to help foster relationships (remember, he's the new kid in school too), so every day Jaysen has a different Link that will approach him at recess, and ask him if he will play with them. Sometimes it's yes, sometimes it's no. The Link will always ask though. It's a really cool program.

My point is, this school is doing their job in trying to ensure that Jaysen will have a positive experience at school. I was able to go on a field trip last week (that's awesome itself since this was the first time Jaysen has "allowed" me to be at a school function). Since I was attending the field trip, they assigned his para to another child. The para approached me and said she was kinda bummed they didn't leave her with Jaysen because she really was hoping to take the day and observe how I interacted with him. I thought that was really cool. Here is a lady who gets mollywhopped by my son on a daily basis- and she hasn't given up on him.

The past two days have been on the better side. I'm hoping some of you are right and this is just a rough patch we're going through.

Thank you all for the support-
My readers RAWK.

(The) Power of attorney

So, as I was saying, we spent 6 hours on just the BIP- not even touching the IEP yet. Although I still did most of the talking, my attorney furiously took notes, and interjected when the school and I came to a standstill (which was quite often).

Although I didn't really gain all that much, the attorney's presence was definitely felt. I remember talking to the Special Services Supervisor, and her explaining to me that if we go anywhere other than his home school, it would be considered "school of choice", meaning that I would have to provide transportation. In this meeting, we discussed other schools, and lo and behold...transportation would be provided. Imagine that.

The school I wanted him in is still a hearty NO. Seems they don't want to "overburden" the school. My argument that deciding on a school should be based on whether or not the school could meet Jaysen's educational needs, and not the thought that my child would be a burden...held little weight. My preferred school is the only school in the district that has teachers certified in ASD. Ummm...yeah, that would be pretty important, but apparently they're sticking with the "overburdening" of the school.

The attorney said that since the preferred school-thing wasn't happening, Jaysen should be allowed a parapro who has no less than one year experience with ASD. She countered that it was an impossible request. The district has a union, and the job posting can say "experience preferred", but it can't be required. The people with seniority get first choice at the jobs and that's it. The attorney mentioned that we could bypass that by writing the parapro qualifications into the IEP. She said they can't do that because the State told her that an IEP does not super-cede the union. The attorney had never heard of that, so he'll be checking into it.

One of the hot topics of the meeting, regarding the BIP, was "teacher discretion". I wanted it taken way down. Their argument was that a teacher has the right to run her class, and to determine what is disruptive and what is not. My counter was that we empowered a teacher, without guidelines, this year, and it didn't prove to be in Jaysen's best interest, now did it?

She had no argument after that. Yay for me. So the discretion was reduced, and we found a way to decide at what level and on what occasions Jaysen should be removed from the classroom. I was cool with that.

After ignoring and avoiding me for over 4 months straight, Ms.Gen.ed has graciously awarded me the honor of contacting me once a week by e-mail, to discuss the previous week of school. I explained this was unacceptable. There are only a matter of weeks left in the school year, and I shouldn't be restricted regarding my communications with her if no other parents are. Ms.Gen.ed now has to respond to my e-mails as they arise.

Gee, Ms.Gen.ed, I guess you should have been at the IEP meeting instead of sending the Phys.Ed teacher in your place. That's what happens when you have no backbone to stand up for yourself- people get to make decisions about you and you relinquish your right to any input.

We're meeting again this coming Thursday, to attack the IEP. Ms.Gen.ed will not be gracing us with her presence at that meeting either, because "the classroom parents" feel she is pulled out of class too much for meetings regarding Jaysen. The attorney made sure he had it clear that the parents were in essence dictating who would attend the IEP meeting. Yep. He later explained that there really is no benefit to having Ms.Gen.ed there anyway, since she's obviously not involved in any positive way for Jaysen. Whatever- just get us out of this school.

On another note- Jaysen had his first playdate with an unfamiliar child. I met this mom online (hey... I'm not dating her), and she lives real close and has a son with PDD-NOS as well. We thought we'd get together and see if our kids were a match to play. Her son was very shy. Very sweet, but shy. Jaysen's a jabberjaw. Half the time he's not making any sense to anyone but me, but a jabberjaw nonetheless.

It went pretty well though- we met at Jungle Java, which is a playplace with a full coffee bar (Whoo-hoo!), the kids ran around and the moms drank coffee and talked about the boys. The only thing they really have in common is they both like Max and Ruby and M&M cookies, but it was our first meeting, so there's still a lot to learn about them. The mom and I had a bit more in common- similar experiences with the boys at school, similar situations at home...it was good to meet someone that understood my life a little better. So, if she and her son are up to it, we'll probably hook up again. Jaysen's suggestion was McDonald's. What a surprise.

Heavy work activity.

Losing my mind...

I have been struggling with the decision of whether or not to put Jaysen back on medication. He did so awesome on the Risperdal, but he did have a significant weight gain, and a TD scare. When I pulled him off of the med, I vowed that I would not put him back on unless his anxiety returned to the point that it had gotten.

My dilemma is:
His anxiety is back up, but it's not due to his lack of self-regulation. It's because of the issues going on at school. Putting him back on, will help him regain focus. I hesitate, because if the district were doing their job, he should be able to handle it without medication. But in reality...they're not doing their job. I fear that 1st grad is totally a wash, and now I'm trying to lay the groundwork for 2nd grade. I also seethe at the thought that the school will take full credit at Jaysen's turnaround, and think that they don't need to provide the support he needs.

The pros: More focused, more verbal, less combative, increased cooperation, willing to participate, increased social skills...

The cons: Could make the school lazy, weight gain, potential major side effects, having to medicate him without him knowing...

I'm sure there are a bunch more, I'm just listing a few of each.

My question to all of the parents out there, whether you medicate or not- what was the deciding factor to your choice? To those parents that do medicate- what medications have you tried that were successful/unsuccessful? Has anyone gone the Risperdal route before? What kind of side effects have you encountered?

Jaysen's scare with TD on Risperdal in the past, freaked me right out.
The neurologist explained that TD doesn't manifest until the puberty years, so he was certain it was not TD (that's where Tourette came in). That's not to say that TD wouldn't surface after a few years of using the med.

But he did so well on it...

If the school were doing their part, this would be a non-issue. Jaysen's behavior at home has been fine. In school, it's a different story. He started out just being "non-compliant", which grew to refusing to do anything at all, and has turned out to be combative, with a splash of physical aggression. But they're setting him off. The teacher admittedly doesn't know how to interact with him. They're not allowing for accommodations, which raises his anxiety, and he goes into fight-or-flight. Everyone thought he was easier to manage on the med, and that didn't sit well with me. They liked the Risperdal-Jaysen. Risperdal-Jaysen is easier.

Just recently, this behavior has started to trickle into the home. I know I can handle it, but unfortunately, he's not with me for the majority of the day. He's talking to himself more, and isolating more.

Ugggggh. Why does this have to be such a difficult decision? I shouldn't feel like it's a lifetime commitment, but I do. I feel like since my child can't communicate to me what he's feeling inside, what the problems are, or how to help him, I am unable to make such a decision for him and feel certain I'm making the best choice.

My question to all of the parents out there, whether you medicate or not- what was the deciding factor to your choice?
To those parents that do medicate- what medications have you tried that were successful/unsuccessful?
Has anyone gone the Risperdal route before, long term?
What kind of side effects have you encountered?


Now excuse me while I go self medicate with a glass of wine.