A twist of fate?

I have a friend who was in a terrible car accident about a month ago. He was driving home from the hospital, he and his sister had just "pulled the plug" for their father (he was very ill for a very long time, and suffered multiple strokes among other things). Anyway, Tony was driving home with his girlfriend, he was wearing a seat belt, she was not. They were hit by a drunk driver. She was thrown from the vehicle, and subsequently hit multiple times in the oncoming traffic. They did not expect her to live for very long. She died a few days later. Tony suffered severe head trauma, multiple fractures, and was in a coma.

Ex was the one to tell me about the incident, since he and Tony are still close. He and friends kept at Tony's side in the hospital, and I think Ex looked to me for comfort, since I work in the TBI (Traumatic Brain Injury) field, and I have seen situations like this multiple times. He wanted to know if things were going to be okay, or if they could be okay. He was looking for hope.

The doctors said that Tony probably wouldn't live for very much longer, and if he did, he may be a "vegetable", but at best would have many impairments. He may never walk, talk, or even open his eyes again. His sister made the difficult decision to give him 72 hours, then let just let him go.

As things would have it, I was going through some papers on my desk at work. I turned a page to find a new admit. It was Tony.

Holy crap.

If he had made it this far, that means he had stabilized in the hospital, and he was sent to us for recovery. Wow. I left work early because I had to go see him. I walked into our inpatient facility (it's a facility where there is 24 hour nursing care), and found his room.

I have to say- I was floored. Tony was sitting up in a wheelchair, alert. His sister was there, so I first said hi to Tony, and asked if he remembered me. He grabbed my hand and kissed it. He motioned for me to make introductions to his sister, which I did. His sister is deaf, so I instinctively started Signing to her (she didn't respond with Sign, so I dropped it- the courteous thing to do in the Deaf community). Tony has a trach, and no sound comes out when he speaks, you have to lip-read what he's saying. He was talking very fast, and I got the feeling he was ushering me out- maybe because he didn't want me to see him "like that", in a brief with his pants pulled halfway up, one eye open (he's hemi-plegic), hooked up to all kinds of machines, and in a wheelchair. I told his sister that I would keep my eye on him, and she seemed to feel relieved.

I don't know what the point of this entry was, other than yet another realization that life is precious. This was a guy that played in multiple bands. A very talented guitarist. He loved the ladies (and they loved him). He came to my college graduation. He was a paramedic. I will be interested to see how life re-tracks for him, and I am thankful that he is in a system where I will be able to be there for him so often, if he needs a familiar face, a friend, or an advocate.

That's all.

And...wear your seat belt.

Who you callin' turkey?

We had a great Christmas/Yule.

Companion and I awoke first. I think we were both close to going in and waking up the kids ourselves, just out of anticipation, but I'm glad we didn't. Jaysen woke up around 9am. He walked out into the living room and although he was in a good mood, the sight of the tree and presents was a bit overwhelming. So much for watching my kid tear into his presents first thing in the morning...he wanted to wait for Rylan to wake up. Awww.

Once Rylan woke up, the two of them opened their presents. Rather, Jaysen opened his presents, and "helped" Rylan open his. Everything was going so well, all of the presents got a positive reaction- one shirt was so overwhelming (a personalized "Sorcerer Mickey" from Fantasia, T-shirt), that Jaysen took it out of the wrapping, immediately ran it to his bedroom, and threw it into a box. Score! He really digs it.

Then there was the turkey.
Oh yes, the turkey. Evil thing it was.

I planned to make my first turkey for Christmas dinner. People do this all the time...how difficult could it be? Let's just say that if I have to make it, we will never have turkey again.

I got the turkey unwrapped, and just stared at it. I knew there was a neck and a bag of disgusting little thing-a-ma-grossness in there, but being the mother of a one-year old, I figured it couldn't be as bad as some of Rylan's diapers.

I reached in, grabbed hold of the neck, and pulled it out. And there it was. The turkey neck. I looked at it, and I realized I was staring at a turkey neck complete with the freakin' trachea dangling from the end of it! NAAAAAASTY! I was so grossed out, I flung the neck into the trash and started to dry heave.

Once I gained my composure...aww crap...there's still that "bag of goodies" in there! I tried to gear myself up to reach in again, but I couldn't do it. Ugh- I started to heave again.

What would a normal person do in this situation?
What did I do?

"Jaaaaaaayseeeeeen!"

Yep. I called my kid to do the dirty work.

"Jaysen, there's a bag in the turkey. I need you to put your hand in here, and get it out".
"No."
"C'mon...my hand is too big. Just reach in and grab the bag."
"No thank you".
"Please?"
"No."
"Just do it. You can have a piece of chocolate?"
"NO!"
"Two pieces?"
"NO!"
"C'mon Jaysen! Look! What's in there? There's something in there! What is it?!"
"NOOOOOO!!!"

Whimp.
Okay, I'm obviously going to have to do this myself. Put on your big girl panties and suck it up. Then it came to me. I had a most brilliant idea. Shaken Turkey Syndrome. I turned the bird upside down and proceeded to shake the shit out of it. Think a 14 pound ketchup bottle. But- it worked! I amaze myself with my brilliance at times.

I prepare the bird, throw it into a pan, and I'm good to go.
Or so I thought, until Companion called and told me I had to clean out the anus.

"The whaaaaat? I mean...I know what an anus is, but I have to what? Are you for real????"
"Yeah (laughing), I guess sometimes there's a second bag in there."
"Holy shit. I don't know if I can do this."

Jaysen's out of the question- he wouldn't reach in and get the giblet bag in the first place, there is no way in hell I'll be able to convince him to root around a turkey anus. By the way? The phrase turkey-butt has a whole new meaning to me. I no longer think it is funny. At all.

This turkey and I were on a whole new personal level, that I figured I should name him. George was his name. George's anus was clear in case you were wondering.
I finally got George into the oven after I threw an apple and an onion inside of him.
Yes- I said an apple. Yes, a whole apple.
Apparently, this is not a popular thing to do with a turkey, because of the looks I have been getting. Hey- I said it was my first turkey! Leave me alone.

George's name was changed to Damien somewhere at the beginning of the cooking process, since he made me burn my wrist on an oven coil. Damn turkey. I'm glad you have a dumb apple up your butt.

Fast forward.
Damien turned out great once his popper popped. He did not get the best of me. Dinner was great. The whole night- was great.

Victory is mine.
Whew.

School rhymes with fool.

If you've been following, you'll know that I've been in the beginnings of a battle with Jaysen's school. He doesn't feel safe going to school because he's always getting in trouble lately. It's not a safe place for him to be himself. The hardest part of that is- I have to send him there. I have to listen to him saying he doesn't want to go to school "they're mean to me". I can't reassure him by telling him "it's going to be okay", because it probably won't be. I can't tell him that "school is fun", because it's not for him. I can't tell him "today will be good", because chances are, it won't. But things are changing. Here's the update so far:

We met last week to discuss a behavior plan. At the beginning of the meeting, I asked for some time to present about my son, because if they don't understand him, they won't be able to create an accurate behavior plan for him. The psychologist (who was leading the meeting) said she would allow me 15 minutes at the end of the meeting, as the meeting was only scheduled to be an hour long. I protested that it wasn't enough time, was told that was the offer, and the meeting proceeded.

The social worker (bless her heart) stopped the psychologist, and said that she feels that it's important to hear what I have to say, as I was correct that the information will help shape an effective plan. I was floored. I was so touched that someone was taking my feelings into consideration, that I started to cry. I quickly pulled myself together, and proceeded to talk for two hours about Jaysen's strengths, as well as areas of concern.

I talked a lot about his sensory needs, and how they may affect his performance in the classroom. I talked about his anxiety. I talked about the impact his expressive and receptive language disorders have on comprehension. I talked about routines. I talked about his lack of self-regulation. I talked about Tourette. I talked...about everything.

The team was great. They listened and asked questions. Almost everyone took notes, and asked me to repeat things while they frantically wrote.

I presented. They countered. At one point when I asked for a parapro, they offered to hire a substitute teacher for three days, and Jaysen's teacher could be his para for those days. Unacceptable. How flippin' confusing would that be? Not to mention that three days is nowhere near long enough.

The outcome was that Jaysen's teacher would receive training in ASD. While she was receiving training, Jaysen would have a 30-day parapro to help him re-focus on school, and give a chance for his teacher to build a relationship back up with him. The para will be there to execute the BIP, support the teacher's instruction, support for Jaysen, collect data, and bridge anxiety before it becomes a meltdown.

He will also receive a sensory diet.

Communication will be daily, in the form of a checklist- I disagreed with the original checklist, as it only stated if Jaysen's day was good/bad on a scale of 1-5. That's not enough information for me. We're still disagreeing on what information needs to be conveyed. I feel they don't take into consideration the aspects of the ASD, and one of my biggest concerns is that Jaysen is getting consequences for behaviors that are manifested from the ASD. Large scale behaviors will be communicated on an ABC sheet as they happen.

His time in the Resource Room will be increased. He will have a teacher assigned to him during "the unexpected" (fire drills, emergency situations, etc). Data is being studied, and a BIP will be in place when the school reconvenes after break. It will be a token-program, where Jaysen can earn tokens toward computer time in the Resource Room.

I had them note that I neither agree with, nor condone the use of CPI holds on my son. If CPI is to be used, it will warrant further discussion.

We are still in the discussion process, and it's going to be rough. This district does not like to accommodate if it costs money. However, his Team is awesome. I feel that if the whole Team is in agreement, the district administrators may have to just follow suit.

I saw the social worker yesterday when I dropped Jaysen off- I thanked her for allowing me the time to present about him. Her words to me were "Oh my God. You are awesome. You presented Jaysen so well, and he is lucky to have such a great mom." I love this woman. She totally supported me when I needed it most, and I really feel that she is behind me. She also has two Autistic children, so she knows how important it is from a Mom's point of view.

For the rest of them? I am becoming a huge pain in the ass. I'm done playing around. They actually think that I have a lawyer...I'm flattered! That means I'm doing my job.

Yesterday, I put a request in for another IEP. They said that they could just do an addendum, and we wouldn't have to call a whole new IEP. This morning, I sent out an e-mail saying that if they're going to do an addendum, these are the things I want added- and listed off all of the things we discussed at the meeting. Since most of them require discussion on their part, I left the call up to them if they want the IEP to reconvene.

It's exhausting, but I have a positive feeling about this. I don't think the fight is over quite yet, but they know that I'm not going to be pushed around and just accept the minimum for my son. Once I got some things straight, the pieces just started falling in place. I researched my ass off, and it is making a huge difference.

I'm sure I'll have some choice e-mails when I return to work on Monday! Can't wait to share...

A big thing that I'm trying to figure out now is, how to enforce the teacher's responsibilities. As I stated previously, my biggest concern was that Jaysen is misunderstood, that raises his anxiety, and it leads to a meltdown, which leads to punishment. Everyone agreed. How can I be sure that if the teacher says he was aggressive, that he wasn't provoked like in the past? There are many things that the teacher has done that escalate his behavior, and I don't think it's fair for Jaysen to be reprimanded for reacting to his environment. I'll have to think on this one really hard.

Suggestions are welcome!

Seasons greetings.

Well, it's almost Christmas. Jaysen's made sure that we are fully prepared this year.

Tree up- check.
Decorate outside tree- check.
Garland up- check.
Presents wrapped- check.
Stockings hung on the mantle- check.
Letter to Santa- check.

I'll have to remind him he's not Christian some other time.
Anyway...

Jaysen has decided, at the tender age of 6, that he is going to be the "Holiday Enforcer".
If there is a holiday on the calendar, it deserves to be celebrated.
No holiday shall go without it's due.
It's holiday diversity, folks.

So far, just this month, we have celebrated Hanukkah, Rylan's birthday twice (once for his b-day, and once for his party), and now we're getting ready for Christmas. At Thanksgiving, Jaysen said he was thankful for God. Usually, that would be a wonderful thing, but I don't know where that came from- since I do not know if Jaysen knows the concept of "thankful", and God is not a discussion that I have had with my son. But I am aware the power-of-the-peers, and figured echolalia had gotten the upper hand on Thanksgiving.

Jaysen frantically last week that he wanted to write a Christmas letter. I did not know what a Christmas letter was (Christmas list?), but my curiosity was piqued, so I gave him a pen and some paper, and told him to go for it. It was a letter to Santa! The best part (other than Dear "Sana")was that he included his brother. He didn't ask for any of my help, and included his brother in the letter twice, on his own accord. He's so awesome.

I had to ask Jaysen a bazillion questions about Christmas and Santa, because I need to know what he's expecting- so I (I mean Santa) can deliver. I wasn't going to do the whole "Santa" thing, but Jaysen has decided that he's a believer. Who am I to interfere with my holiday-diverse son? He's Christian at Christmas, Jewish at Hanukkah, Hispanic at Cinco de Mayo, Buddhist on Buddha's Birthday, Pagan at Samhain...I'm sure the list will go on. Atta boy, Jaysen, embrace it all!

However, I'm exhausted, and wondering if I will lose my mind trying to find decorations for Groundhog Day.

Quick update.

...and I mean quick. I seem to have evaded the flu's nasty grasp thus far, but the rest of the family is not so lucky. Rylan has been throwing up for the past 2 days. Tonight was my work Holiday Party- we got home around Midnight. Around 3am, Rylan starts crying and Companion says, "Hey, can you please get him, I think I'm going to be sick." Great. So I think he's going to be useless with a hangover in the morning. I'm trying to put Rylan back to sleep, when Jaysen calls, "Mommy! I frowed up!" Ohhhhh....

I put Rylan down and take care of a vomit-covered Jaysen. Vomiting has been scary for Jaysen, but this time, he really listened to my direction. We changed his shirt, I sent him to the bathroom to wash his hands, and then to lay on the couch.

Rylan's still crying but luckily, Jaysen fell right to sleep. I just now got Rylan back to bed. I don't know how long it will last. Rylan's asleep in his crib, Jaysen's asleep on the couch, and Companion is asleep on the bathroom floor. My poor family.

This stinks. Quite literally.

Onto the update with school.
I received a call from the principal wanting to set up a meeting for next week. I also got a call from the Director of Special Services for the district. She's the big admin. who denied him bus services on the grounds that his expressive language disorder makes him safer than other kids because he won't talk to strangers as easily. Yeah. I spoke with her, and she was apologetic about the procedure, that they did not notify me of putting my son in a restraint. She said they didn't have a procedure in place because they didn't think of Jaysen "that way" (behavior issues), which is funny because he had a behavior plan last year. She admitted that's no excuse, but that's what happened. The teacher that had Jaysen restrained, just forgot to call me. Whatever.

So, we're all meeting next week to discuss a behavior plan and procedure. I'm also going to ask for a parapro.

The thing that makes it difficult right now, is that I don't believe they've broken any laws. Common sense and ethics? Sure. Laws? I think that they're very adept at covering their asses. When I was fighting the last district, they were so out of compliance with so many laws, I was shocked that a district could be that stupid. Although it was still a difficult fight, I was concrete with my presentations. I cited articles, laws, addendum...all that good stuff. I had legal-knowledge at my back. Currently, all I found was one line in the State policy and procedure for physical and chemical restraint. I don't have the actual name of the policy in front of me, but it's something like that. One line. That was my back up this time. Not quite the arsenal I had Downriver, but this hasn't turned out to be the "big guns" type of battle just yet.

That's all I know. I am praying the flu decides to show mercy on me.
More later...

~X~

Here we go again + Hiatus.

Well- I was really hoping it wasn't coming to this, but it appears there is a severe lack of communication with Jaysen's school.

For weeks now, I have been requesting communication as to how his days were going, to which I've only been told "Oh, he's doing fine. A little tired, but fine."

Apparently things are not fine.

My son told me last night:
"The 'bad teacher' (ironically, the Autism Consultant) put me in the kindergarten. She put Baby Shakespeare (tape) on the shelf behind the books. She wouldn't let go of my arms like this (demonstrates a "basket hold" restraint), and I cry."

"Ms. B (principal) wouldn't let go of my pencil."
I asked why Ms. B wanted to hold onto his pencil-
"I playing with it like this (stims)."

I am pissed. I am way beyond the realms of frustration. I am seething.

First of all, if this "Autism Consultant" was worth a shit, she would know that Jaysen's behavior would escalate if she took his tape away, especially if she put it out of his sight. She would also know that "stimming" is, among other things, a coping strategy for him in times of anxiety. Interrupting his stim is going to cause his anxiety to rise as well.

His behavior escalated to the point that the Autism Consultant felt it necessary to apply a "basket hold" type physical restraint. The kicker? I was not contacted at all regarding any of this. I had no idea that Jaysen's behavior was even an issue, and I sure as hell had no idea that it "required" physical restraint, until he told me last night. That's saying a lot, considering Jaysen's language issues.

My child does not feel safe in his own classroom. This is absolutely unacceptable.

When I tried to ask his teacher this morning about it, she refused to give me eye contact, and said very coldly, "I have to greet my students. I'm too upset." Bitch, I don't care about your emotional status. I care why my son was restrained without my knowledge yesterday. I just walked away, and fired off an e-mail to practically everybody in the district.

All of his other classes are great! Reports of his hard work, how far he's come, and he's a pleasure. Except in his home class. Gee, what does that tell me?

So- I am probably going to take a (hopefully) brief hiatus from The Quirk Factor here. I've fought a school system before (the crappy school in our old district-see post here), and it looks like it's headed that way again. Those of you who have battled a district before, know the time and energy it sucks out of you. It's not fun. Personally, I'd rather have a root canal. This time though, the gloves are off.

I will be checking my e-mail frequently, so if you do have powerful advocacy tips you'd like to share, I greatly appreciate them. Wish me luck, and I will try to update.

While maintaining my best professional front-
...they're about to meet Momzilla.

Happy 100th Post to Me.

Knit-wit

Conversation per last night:

"Mommy, I need a sleep hat."

"A what?"

"A sleep hat!"

"What's a sleep hat?"

"A hat. For sleep."

"Really."

"It's triangle. It's long, long, long."

"Ohhhh...a sleep hat (think 19th century style). I don't think you can get those anymore, but maybe we can make one ourselves."

"Okay!!!"


Now. What you need to be aware of, is I do not have knitting skills. Nor do I have sewing skills. My crafty skills remain rooted in scrapbooking and crafts, not functional things. So, we have a problem. I promised Jaysen I would make him a sleep hat. Boy, my mouth gets me in trouble sometimes.





So. I took a knit hat. I found a scarf. I cut the scarf, sewed it around the hat, and created this sort of freakish Frankenstein version of what would hopefully pass off as a sleep hat.








He was not in the least bit amused.




So I am asking any knitters out there...if you are able to make a sleep hat (preferably two!), I would love to buy them! Hopefully my son will start speaking to me again.



In addition, I am so excited to try the new CD from Pickel at My Two Boys!
Thank you so much!

Momzilla escapes.

Most of my posts are of uplifting, if not downright humorous, antics that involve my son, Jaysen. I've often been told "you have the patience of a Saint", and "you are such a wonderful mom, I could never do what you do". To me, I am not really doing anything out of the ordinary, and parenting my boys is naturally part of my job as their mom.

Well, as some of you may have guessed, I am only human.

And I lost it.

The other day, I was trying to get Jaysen ready for school. He wanted to "finish level 5" on his video game. Quick mental inventory reminds me that the levels on this particular game are short, and Jaysen can, in fact, finish the level within enough time. I agree. "Finish this level, then it's time for school".

Level 5 ends and level 6 begins. I remind Jaysen of his promise, and he pleads with me. I stand firm. We go through the whole shebang of "If you don't turn it off, I will", and the 1-2-3 countdown began. He did not turn it off, so I did.

"Maaaaa-Meeeee! You turn it off!"
"Yes, I did. It's time for school."
"I not going to school!" and he hit me.

I chauffeured Jaysen away from the game and outside. He continued to scream that he was not getting in the car, and not going to school. I chauffeured him into the car, where he hit me again. This is the first episode of physical aggression since beginning any medication many months ago, and he has been totally off of meds for about a month.

I buckle in my screaming child, and enter the car myself. I pull out of the driveway and begin our journey to school. We had just gotten in front of our nextdoor neighbor's house, when Jaysen's tone changed. There was a bit of panic.

"I need a tape!"
"You have 'Bach' in your backpack."
"That's a CD, I need a tape!"

Another mental inventory knows that he does need a tape.
I want to make this a lesson learned that he has to consider these things before we leave the house, take some responsibility for getting things ready for school, and the such.
He is late for school, and I will be late to work.
I also know that if I do not turn back, he does not have a chance in hell of having any sort of decent day, this will mess up his whole chi, and he will be combative at school.

I slam on the brakes.

"WHAT IS THE PROBLEM?!?!?!!!!" I scream at the top of my lungs.
He covers his ears and starts to protest my volume.
"WHAT IS THE PROBLEM?!?!?!!!!" I scream another 3 or 4 times, spilling my coffee all over my lap in the process.

Then it happens.
There is a scream.
It is not an ordinary scream.
It's fierce. It's commanding. It's raw and primal.
And it's coming from me.

Jaysen is frozen. I reverse back to the house, throw open his door, and growl through clenched teeth, "get a tape".
He runs into the house crying "I'm sorry! I'm sorry! I'm sorry for you!".
I follow him, to find him standing in the dining room totally confused, crying "I'll make it work. I'll make it work. I'll take Dolittle". He bolts out to the car and gets in.

On the way to school, Jaysen is telling me "I'll make you happy, Mommy". I do not answer. In fact, I start sobbing. I had just let out probably 3 years of frustration, and it scared the crap out of both of us.

We arrive at school, a bit calmer. Jaysen does try to make it up to me by suggesting (since we are late) that we run. We make it to his classroom, where I apologize for yelling, and tell him to have a good day. "Bye" was all he could muster.

I'm just about to round the corner, when I hear, "Mommy! Wait!"

I turn to see Jaysen standing at the end of the hallway, totally red-faced. He wasn't crying, but his face was so red! I start to walk toward him.

He says "I want to give you a hug."
I kneel down, he hugs me, and falls apart in my arms. He starts sobbing, a sob that really means I'm sorry. He tells me over and over "I love you. I love you so much. I love you." Then he gives me a huge heartfelt kiss on my cheek. I think that's the first time he's ever done that. He squeezes me again, so hard that I thought I might pass out.

We both collected ourselves, and he walked back to class. He kept looking back to see me. When he got to his room, he quickly turned around and blew me a kiss. Another first.

I went about my day, feeling guilty that I lost it like that. I had screamed so furiously that not only did my throat hurt, but I pulled a muscle in my neck! I realized that there is an important factor here though. I lost it in front of Jaysen, not at Jaysen. I still felt like crap regardless. When I got home from work, Jaysen greeted me with more hugs. I was thinking maybe I scared him enough that he would shape up and be an "angel" for the rest of the week.
Ummm...no.

So at least things are back to normal. :)

Big shoes to fill.

Jaysen has a big thing about going to "check the mail".

He saw the mailman come and yelled for help with his shoes. My mom told him to just put on a pair and not worry about tying the laces.



Look closely.



























Apparently she never specified whose shoes.
'Nuff said.

Self talk.

Jaysen goes through phases. Right now, he's in "video game" phase. I should limit the amount of time he spends playing these games, but I know that in a matter of a few weeks, he'll be onto something else, and frankly, it gives me a bit of time to get things done around the house! :)

Now- in his defense, I do remember being involved in video games, and it was a big deal to get to that next level, to get the high score, and all that crap. He has really gotten good at some of them, and it is neat to see that he can play them now by himself, without too much frustration.

However, it was time for bed. And Jaysen was on a roll. He pleaded with me "last one, then go to bed ". I hesitantly agreed. Jaysen's usually pretty good at following through with his promises, and I figured I could always lay down the law if need be. So I went to lay down in my room.

I heard the game restart. Arrrggh...now I have to go start a battle because he's not listening. I walk out to the living room where I see Jaysen in the process of turning off the TV. He spies me, and immediately growls at me (for not trusting he would keep his word?).

He yells angrily, "Maaaah-meeee! You go to your room!"

Fine with me, I'm going to bed. So I went into my room.

Something wasn't quite right. I peeked into the hallway and under Jaysen's door. His bedroom light was off. Hmmm. He would not turn his light off and go to bed alone. He starts talking. I fight between eavesdropping and sleep, but decide on the latter.

His door opens. He tiptoes into my room, climbs up into my bed.

"Mommy? I'm sorry."

"Sorry for what, Sweetie?"

"I'm sorry- I get mad at you. I get mad, and I say 'Mommy!' and go to my room. I shut the door and I go to bed alone. And I talking! I not mad now. I love you, Mommy. Goodnight."

Wow. That was awesome. He not only self-regulated, but he talked himself through it, and told me about it! I told him that it was great that he talked through it, and wasn't angry anymore- but really, I was blown away.

Thanksgiving- thankful it's over!

Thanksgiving...a time to reflect on the blessings in your life...
...or to bully little old ladies.

We went to Companion's parents house for Thanksgiving- Jaysen decided to pick on Mary, Companion's step-grandma. Mary was apparently sitting in Jaysen's "spot" on the couch. When Jaysen asked her to move, and she didn't (hey, she's 93 years old- did she really hear him?), He declared war on her.

"I don't like you... very much"
"You not coming with us, old lady!"
"Get out of here! Go to your room gramma!"

Those were only a few of the choice statements to spew forth from my child's mouth.
But the best...
the absolute best...
the highlight of the whole craptastic episode....
was when the meal was finished.
Jaysen and I were outside, playing in the snow, waiting for everyone to posse up. Companion's mom started down the stairs, and Jaysen says, "Where's Mary?" Mom replied "Oh, she's coming." Jaysen kept waiting and looking for her.

Once Mary came into view, Jaysen took a step forward and called, "Maaaaary..."
...then pegged her in the belly with a snowball!

I was mortified.
I was not only mortified, but I was trying to stifle my laughter as well (remember when I said I find non-funny things hysterical? Well, this is one of them). I don't know what the heck had gotten into him. It was such "typical" behavior, if it were two kids! I couldn't yell at Jaysen, because I knew that he would know I was trying not to crack up, so I just said,"ohmigod, I can't believe you did that- getinthecarnow."

He's lucky I didn't stuff him...Turkey.

A quick meme

MOM-NOS has tagged me for a meme- I believe this is my first official meme, so although I do not usually blog from home, I didn't want to be rude! Plus, my parents took Jaysen to a youth symphony and Rylan is napping! So my duties lie herein:

1) Link to the person that tagged you, and post the rules on your blog.
2) Share 7 facts about yourself.
3) Tag 7 random people at the end of your post, and include links to their blogs.
4) Let each person know that they have been tagged by leaving a comment on their blog.

7 random facts:
1- I have said before that I am a coffee addict. When I say coffee addict, I mean it in every sense of the word. I consume an average of 5 pots of coffee each day. Yes, that's 5 pots. I drink coffee before I go to bed. Yes it's caffeinated, and no it doesn't affect me. I once was unable to donate blood because my blood was "too thick". I now drink water before I donate. I would bathe in coffee if I didn't think drinking your bathwater was gross.

2- I have a morbid sense of humor. I don't really know if morbid is the most accurate word, but I find humor in the most bizarre things, and they're not just funny, they're hysterical.

3- If I were claymation, Jack Skellington would be my boyfriend.

4- I don't like to be given flowers. If someone brings me flowers "just because", that's fine. I do like fresh flowers in the home, it gives the house such a fresh, sunny feeling. But there is no quicker way to piss me off than to give me flowers for my birthday, or any other occasion. I think they're a total waste of money.

5- I love to scrapbook. However, the last page I left off on was Jaysen's first day of Kindergarten. Jaysen has gotten so clingy, and with a baby now- I haven't had the time to catch up.

6- I have a very eclectic taste in music. I listen to just about everything from 80's pop to gangster rap. In my CD player right now is Cindi Lauper, Sisters of Mercy, ICP, Eazy-E, and The Church.

7- I have a degree in Sign Language Studies. While I was in school, I was so in love with Sign, and such an advocate, that I actually wanted a deaf baby. Not "it would be okay if my baby was deaf", I preferred a deaf baby. I felt I would be the one to provide my child with all of the right opportunities, be a part of the Deaf Community, and be the one to show her ('cuz she was also a girl) how to be a strong Deaf adult. Funny how things turn out?

Okay, there are my random facts. Enjoy.

I can only tag 4 people as I've run out of time!

Ashley's mom at Pipecleaner Dreams
Amy at Mom's Daily Dose
Casdok at Mother of Shrek
Jodi at Reimer Reason

'Scuse me, you're stepping on my brain.

I've often felt that Jaysen and I have this connection. That I understand him. That we have some of the same quirks. I know why he does them, but can't explain it. Am I a touch on the Spectrum too? I've firmly believed that whatever wasn't "typical" with him, was the case with me as well.

I was not expecting this.

Recap from our trip to the Neurologist/Movement Specialist:

Following Question and Answer time...
Doc: He does not have Tardive Dyskinesia.
Me: Okay. Are you sure?
Doc: Yes. TD has an onset of adolescence. This is not TD. It's something totally different.
Me: Alright.
Doc: You have it.
Me: Okay...
Doc: It started when you were in early childhood.
Me: Yes...
Doc: As an adult, you've learned to adapt, so it's virtually undetectable.
Me: Yes...
Doc: It's genetic, and you passed it on to your son.
Me: Okay...

At this point, I'm wondering what the heck is the deal with this huge "reveal". Am I supposed to guess the affliction? Is this a guess your diagnosis game? Justtellmemotherfucker-becauseyou'rereallymakingmeanxious-andI'mgoingtoeitherlaughcryorsmacktheshitouttayou.

Me: So...what is it?
Doc: Tourette Syndrome.
Me: Tourette.
Doc: Tourette.
Me: Well alrighty then!

Being disability savvy, I realize that Tourettes is more than just the infamous coprolalia of hollering out obscenities, and am open to hear what Doc has to say. He proceeds to explain that he's not totally convinced that Jaysen has ASD, because Tourette is "like ADHD plus tics", and a lot of the quirks that I described are "classic Tourette tics". It is often confused with OCD. Apparently, Autism stims can look a lot like Tourette tics as well. His official diagnosis was Tourette with ADHD and developmental delay. Which he just may grow out of. Erp?

My mind is pretty much blown. What does this mean? Do I have to return all of my Autism stuff? Dammit- I just bought two more shirts! Should I change the name of this blog? How's this? The Quirk Factor: ...it's only Tourette. Goodbye to all of my fellow Autism bloggers...I'm off to find some new Tourette buddies.
Joking!

I am still not convinced that's the case. This Doc didn't seem to think of Autism as a Spectrum Disorder, stating that since Jaysen has social skills (will answer questions, has eye contact) he didn't feel that he qualified as Autistic. I tend to think his view of Autism is stuck more with classic Autism.

Much research and discussion is needed here. Does Tourette Syndrome have sensory issues as well? What about behavior issues? Why does Jaysen have so many issues, when I had practically none of the same ones he has? Is there a Tourette spectrum? Of course I'm thinking of a bazillion questions after the fact, but I will be researching like a fiend. Next stop is a trip back to the psychologist to discuss these findings. He's the one who seems to "get it" best.

Until next time-wishing you and your families a very Happy Thanksgiving!

Arsetarts.
(Sorry, couldn't resist...must be my Tourette)

So.Sick.Of.This.

The resolution that the teachers came up with was this:
Gen.ed refuses to meet with Sp.ed unless there is a third party present.
Yes, you read that correctly.

Gen.ed thinks things have been "getting twisted", and people are not reporting things accurately. She is getting her "twisted" information from...my mother. My mother? What the heck does my mother have to do with any of this? She talks to the teacher out of concern for Jaysen (remember, I've always said that Moppi's heart is in the right place, but she just doesn't get it), and is so easily led to believe anything a "professional" tells her. She also has trouble keeping her facts straight- to this day, she tells people I am a "Sign Language Interpreter". More recently, I got a "degree in Medical Billing". The reality is I have a degree in Sign Language, and recently passed the Certified Procedural Coder (CPC) exam to work as a Medical Biller. It's actually pretty funny, but she really is making me seem more worth my salt than I am.

Getting back to the issue- I explained to Moppi today, that she is not to speak to anyone at the school. She wants to believe that everyone is doing what's best for Jaysen, but the reality is, there is a huge battle of ego going on right now. The principal is involved and doesn't have a clue what's going on- she's stuck on the issue that gen.ed wants Jaysen's psych. testing for her file. Sp.ed says they don't release that information to gen.ed. The principal says sp.ed released all of the records at her last school. Sp.ed says, this isn't your last school. So sp.ed is seen as uncooperative, reg.ed is seen as incompetent, and nobody is focusing on Jaysen's best interest.

Sp.ed decided that if reg.ed is not going to be able to handle Jaysen's academic needs, she will take it into her own hands and pull him full time. Jaysen was supposed to be mainstreamed in reg.ed, with sp.ed support mainly for behavior and transition issues. Now? He's in sp.ed full time. The only time he's not in sp.ed is when sp.ed is working with another student 1:1.

What the crap is that?!? How did he go from sp.ed support to sp.ed dependent?!? It's the issue that I am faced with. Jaysen is not getting the academic support he needs in reg.ed. So sp.ed says she will do it, because that's what's in his best interest. Well, he also needs to be in the classroom, to know about the workings of a class, and to be a part of those dynamics. He needs to learn to work independently, not always 1:1. He needs friends.

Reg.ed says "he's just not as smart as I thought". She thinks he can only read sight words, and is way below grade level in math skills. Sp.ed says she is working on 2 column addition (above grade level) with Jaysen, and when she can report to gen.ed that he is using "Read Naturally" with her, gen.ed will know he can read fluently. In short, she'll be able to rub it in her face.

I am to the point that I am ready to go off on everyone. I want to scream at them, "Get over your stupid selves! This is not about who is "right", who "wins the kid", or anything else! This is about my son! Get your stupid shit together and focus, dammit."

So, this is where I'm at right now.
I am sick of this bullshit, the immaturity, the idiotic-ness of it all. I am sad, and I am madder than hell. I don't think there are phrases illicit enough in the English language to describe how I'm feeling. Maybe Maddy or Casdok could lend me a choice phrase or two in proper English, or British bitchout bollocks-style? :)

Hey- let's make it a contest! Open to anyone- leave me your best heated phrase or insult! The winner will be congratulated, and have their choice words used at the next opportunity presented. You will also receive, as a bonus, a detailed description of what their faces looked like when winning phrase was uttered!


Get mad, and let 'em rip!

This Butt's for YOU!

My lil' boy is in trouble. For real trouble, with the school.

It was a classmate's birthday yesterday, and the class was writing birthday wishes for her. Jaysen's paper said:

We have buts for you, and poop for you, and a moon.

Apparently, the teacher was deeply offended. Offended to the point that she took it to the principal. The principal shared her concern, and brought it to the Sp.ed teacher. The principal expressed her disapproval by saying, "The one we discussed yesterday? Well, look what he wrote!" and rambled on about how his malicious act is disturbing, offensive, and bullying.

Sp.ed teacher took a deep breath, and said she would deal with it. She talked to me this morning. She asked me what I thought. What did I think? Hmmm...what did I think? I think I had to think of something fast, because I could tell she was awaiting an answer, and "his writing is really good" was not the correct one.

"Well...Jaysen thinks butts, poop, and farts are funny. He jokes about it all the time at home. I can even hear how he's saying it...we have butts for yooooou, and poop for yooooou!"

"THAT'S what I thought!" Was the sp.ed teacher's reply.

*whew*

So we discussed that Jaysen wasn't trying to be malicious or hurtful in any way. He was trying to be funny. He even meant "moon" as an actual moon, and not a "showing of the butt", because he drew her a moon at the top of the page.

Yes. I am a mom who shares "butt jokes" with her son. Why? Because he responds to humor.

Examples:
~Jaysen, you'd better not eat another cookie, or your butt will get big. I ate 3 cookies, and look at mine.
~I see London, I see France...Jaysen's got no underpants!
~Jaysen, if you don't brush your teeth...your butt will fall off.

Jaysen tries his best to joke back:
~Mommy...look what I got for you... (shows me his butt).
~Hey Mommy...Butts!
~Hey Mommy...come here...I have a present for you...it's a... fart!

He knows I'm joking, and we share a laugh. It can be the deciding factor of if he will go into pre-meltdown, because it's a major distractor. Yes, I joke about butts with my kid. You could blame it on genes, except I'm adopted. He recently learned the ol' pull my finger routine from my Dad. Except, Jaysen hasn't quite figured out that this trick is best done while you have to fart.

His version?

"Pull my finger!" (nothing) "Oh...I'm outta gas."

Bwahahahahaaaaa! I thought that was hysterical. I'm outta gas. Ha! What was I...oh yes...school.
*Ahem* the school was less than pleased with this aggressive action displayed by my son. The Sp.ed teacher said she would get to the bottom of this, because now he's being viewed as a troublemaker, as well as just mean. She also said that if this treatment keeps up, she'll pull him into her room for the whole day, and teach him herself. I don't think that's the answer either. He needs to be with his peers. He wants to be with his peers. This is getting so crazy, and it's just not fair.


So, keep your fingers crossed...
Oh yeah, enjoy this butt.

IEP- knew it was too good to be true.

I should know better than to open my big huge trap. I just got done extolling this I-Team, in awe of the whole process...

Jaysen's regular-ed teacher did not present anything at the meeting, and is now butthurt. I guess she has a bruised ego, and felt attacked. As a person, I feel badly (although nothing negative was directed at her, only what Jaysen requires in the classroom). As a mom, I'm screamin' "get over it- this isn't about you"!

~Monday, she started referring to herself by her last name, when up until now, it's been "Please! Call me Marie!"
~It went from "Jaysen is very bright" to "I just don't think he's as smart as I thought he was".
~She has gotten short and impatient with me.

Onto bigger things like-

Yesterday, Jaysen had a meltdown at school (his first one this year). I still don't know what happened, but the teacher reported to my mother that he started screaming at her "you're not nice! I don't like you!" Which upset the whole class because they were defending that she is nice. The screaming continued, and he eventually spit at her. She did not notify the on-call support staff. She sent him to the office.

My mom said that the teacher wrote a note to me, and it was in Jaysen's backpack. What did the note say?

Jaysen was very tired today. He wanted to lay down in the office.
Here is the work he didn't want to finish.

And was attached to seven homework pages.

So, had I not spoken to my mother, I would assume that Jaysen's day was fine, he was just a little tired. She never even mentioned that he had a rough day. Instead, she sends home seven pages of homework? How long was my kid at the office?

He completed 2 and a half pages at home, and I threw the rest in the trash.

When I dropped him off at school today, I met up with the special ed. teacher. I let her know that something was possibly going on, and Jaysen had a meltdown yesterday. She was pissed. She was pissed that the teacher did not call her for assistance, pissed that he was sent to the office instead of the Resource Room, and pissed that the office never notified her that Jaysen was there. She had no clue about any of it until I told her this morning. She also said that the teacher has been treating her strangely- being overly compliant, and wanting her to take Jaysen anytime.

It is bothering me that Jaysen had his first meltdown, but more so that he spit at his teacher. Jaysen does spit- but only when he's really pissed. He will hit before he spits, and was most likely provoked. I don't know if it was her change in attitude, or that he was allowed to escalate to that point, but something isn't right.

I'm going to give the benefit of the doubt that this really just may have been an "off day" for all, but I am remaining on alert.

En garde.

IEP-time again.

Today was Jaysen's IEP (whew- glad that's over!).
It seemed to last forever, but it was such a productive meeting. I am extremely satisfied, and once again, am in awe of what a good school district can offer.

Here's a synopsis:
Speech: Work on the 5 "W" questions, increase mean sentence length, focus on comprehension, and build on conversational skills.

OT: (consult) Incorporate a sensory diet into his day (thank you!), and try "brush therapy". I've tried brush therapy in the past- he hated it- but the OT said you have to push past the initial screaming (out of my comfort zone again), and be consistent with it for a month. He has to be "brushed" for five minutes every two hours of his waking day. Crap- that's a lot. She says that if the child is responsive to brush therapy, it will realign his sensory system, and it won't ever have to be done again. I suppose it's worth a try!

Social Work: Continue working on social relationships with peers, conversational turn-taking, and feigning- I mean keeping interest in the conversation.

Resource Room: Begin reading program (I can't recall the name of it right now) to accelerate his reading curriculum. Continue to build math skills with touch math, and move into two column adding with carry-overs.

I think that's touching on all of the "special" points. I was a little hard on his regular ed. teacher, and I wasn't doing it on purpose- it's just that the issues I brought up, were from last year that never got addressed, and I wanted to make sure they were addressed this time.

For instance, I explained that Jaysen is afraid of making mistakes. He had learned to write on regular lined paper, so when he was introduced to the 3-lined paper, he became very confused and his writing got really sloppy. This kid has no clue why that middle line is there, and is writing letters on top of it, below it, anywhere, as long as his letters don't go outside of the lines.

She will give him regularly lined paper.

Keeping with the same fear of mistakes, I explained that to Jaysen, one mistake is just as bad as 100 mistakes. I understand that she is trying to help my son, but I can't show him a paper that is full of red pen. I also can't show him a paper that is full of red pen, with a star at the top that says "Great!", because in his head, how can it be "Great" if it's full of red pen?

She is to correct the assignment. If the assignment is a spelling test, she will only correct his spelling, not the formation of his letters. If the assignment is letter formation, she will correct the formation of the letters, not if they're too big or too small. Etc.

And so on. I don't feel poorly about his regular ed. teacher, I just think that Jaysen is the first "special needs" kid she's ever had (she had me explain to her (at Wednesday's conference) what an IEP meeting was). I do give her props for asking me, and for giving her input at the meeting.

It was a really good meeting, he has a great IEP, and I think this Team is the greatest. Jaysen has made such gains, that the new staff to the Team were in disbelief that he was ever "like that". I also have to clock out now, so I'll catch you all later!

Tricks with glow sticks.

Another thing I love about Hallowe'en? Glow sticks.

Glow sticks are cool for any kid, but when your kid is a "flapper"? Wow. A glow stick takes on a whole new persona. I had forgotten that this is one of my favorite things about having an Autistic child around Hallowe'en-time.

Picture this- it's bedtime, and we're laying in bed trying to fall asleep. Zzzzzzzzzoom! A flash of brilliance fills my field of vision.

Zzzzzzzoom! Zzzzzzoom! More flashes of light. All of the sudden, the flashes turn into a butterfly. Jaysen is stimming...in the dark...with a glow stick.

Wow- this is cool.

The glow stick continues to dance furiously. It flaps, it zooms, it spins, it twirls, and makes fluid shapes. They're like liquid designs floating in space. It's beautiful.

I watched his show for a bit, then gently reminded him that it's time for sleep. He continued for a few minutes more. His familiar movements invisible, only to be traced by bright neon green. When he decided he was finished, he put the glow stick under his pillow, where it stayed until the next night.

Is your child Autistic? Do they flap/stim? Give 'em a glow stick at bedtime, sit back, and enjoy. I guarantee you will see a most fantastic display, that your child creates.

A letter to Jaysen

Dear Jaysen,

I love you. I love you with all of my heart. You know this. But Sweetie...you are wreckin' my holiday. Hallowe'en has always been my extra fabulous fantastical favorite holiday, and you're wreckin' it for me, kid! Maybe, one day, when you're older or grown up, you too will appreciate Hallowe'en as I do; but for now, I guess I'll just have to be content being "mom".

Yep- Mom.
Although I love being Mom, it's not really scary (well, maybe at times it is), it's hardly gruesome (am I forgetting that last vomit-filled bout of the flu?), it's not fantasy (except for my new role as the Tooth Fairy), or glamorous (yeah, nothing to add here). Okay- forget all of that as my examples are weak.

*sigh*

Case in point: I purposely made my Corpse Bride (from the movie) costume ultra non-scary. You still persisted to pull off my wig, and wanted me to wash off my "purple eyes". Last year, you refused to let me wear the red Raggedy Ann wig, and wiped off my freckles. People thought I was the St. Paulie Girl.

Jack o' lanterns, ghosts, bats, skeletons, Hallowe'en songs, games- all of it is tolerable, except... Mom in costume. Why???

I know- your costume criteria:
#1- Nothing on the face (for fear of changeling. i.e. make-up cat whiskers may make you turn into a cat).
#2- Costume only.
#3- No wigs or hair coloring of any kind (hair must remain its usual color). Hats are okay.

Yes- I realize I violated rule #3, but I was hoping it would be okay since I didn't do the whole get up. I was going for 2 out of 3?

Oh well, there's always next year.

I love you,
...Mom

Toofless.

Yesterday, Jaysen lost his first tooth!

It was so exciting for him, and he looks so cute with this little space when he smiles. At first, I wondered if he would be preoccupied with the space, but he seems to play with it the same amount any other kid would. In fact, I had to goad him to have fun with it- "hey, why don't you see if this french fry will fit in there? What about this straw? Can you drink with the straw and close your teeth?" I think he officially figured out that his mom is strange.

Sorry, kid...you're stuck with me until you're at least 18.

We had been discussing the Tooth Fairy, as a preparatory measure (we will have NO surprises in this house), and Jaysen informed me that when you put your tooth under your pillow, the Tooth Fairy leaves you...a quarter. A quarter?!?! Awesome...I'm getting out of this so cheap! Then he tells me the Tooth Fairy also leaves video tapes. I told him I'd have to ask her, but I didn't think that was true.

So last night, Jaysen wanted to do anything but get ready for bed. I had him write a letter to the Tooth Fairy-"Dear Tooth Fairy, I lost my first tooth. Love, Jaysen." He ended up getting so angry because he couldn't draw a picture of a tooth (to his liking), he almost went into meltdown-mode, and then he drew a picture of himself, mad, and a really scared looking Tooth Fairy. Eep!

He was up and around doing a bazillion different things, from playing with play-doh to wanting to learn to play jacks. I finally told him that he'd better hurry up and get in bed or the Tooth Fairy won't come. The Tooth Fairy comes when you're sleeping. The next thing I know, he's in the bathroom putting toothpaste on his toothbrush. That little sucka brushed his teeth by himself, without supervision or assistance, got into bed, and called me to turn out his light. I could not believe it. (I still had to lay with him until he fell asleep.)

So the Tooth Fairy came, and left a dollar and a small bag of Hershey's kisses. Shut up! So my Tooth Fairy left candy! I had to make sure the Tooth Fairy experience was a good one after all that!

Anyway- this morning, I had to wake Jaysen up. When I told him I thought the Tooth Fairy had come, he said in a distressed tone "Oooh nooo! What are we gonna do?" Not exactly the response I was expecting. Did he think she "stole" his tooth? Did he want it back? What if he is expecting only a quarter? What do I do now??? I didn't do anything. I just sat there. Jaysen threw the covers over his face, and after about a minute, re-emerged with a half-smile on his face ready to check out his bounty.

In the end, he was happy.

Doomsday

There's been a lot of talk about acceptance lately. Let me just share something that really ticks me off. The magazine Scientific American Reports has a special issue on child development. In this edition, they discuss things like child development, Downs syndrome, and of course, Autism.

First, check out the titles of the Articles:
The Downs syndrome article is called Just a Bit Different.
The Autism article is called Broken Mirrors.

In the articles...
Downs syndrome is described: People with Down syndrome don't "suffer" from their disorder- only from bad treatment by others.

Autism: Some children may not be "doomed at birth"; some children have a genetic predisposition, and something in their environment triggers the disorder.

And we wonder why people are so afraid of Autism? Why they feel so sorry for our kids?
Well hey- didn't you know your kid is DOOMED?
Sorry, I didn't realize that. I wonder if Jaysen knows.
Should I tell him before or after dinner?

There was of course the overtone that these children are suffering, that they are empty, with no hope, and if you don't receive early intervention, your kid is doomed to a non fulfilling life-

"By the time a child is three or four, deficits can still be reduced, but fundamental changes are no longer possible, because the critical period during which speech develops, has passed by."

So which is it? Three or four? I need to know! What if I miss that opportunity? I want my kid to be smarter than mashed potatoes! What happens if I read this article, and my child is six? Crap! I missed it!

There were some other things in the article though, that of course I had a smart-assed laugh at-

Children's brain activity stayed the same when they were asked to perform an activity. Their brain activity increased when they observed another person doing the same activity on a video. I thought that was hysterical. Did you catch that? On a video! Hey- maybe brain activity increased because it was on a video?! If the kids were anything like Jaysen, video is the magic word! His brain activity would increase as soon as he saw the television, just in anticipation of a video.

I'm not downplaying Downs syndrome, I just find it interesting, the different exposures of the two disabilities. One definitely is presented in a light of hope and encouragement, of social acceptance and promise. The other is presented in a light of desperation, and inadequacy.

That's all for now, I have to go make a bunch of big black A's to sew on all of Jaysen's shirts.

We've been haunted!

Last night, around 9pm, there was a loud knock at the front door. Jaysen announced that "someone was here", and began to unlock the door (wonderful parenting skills- knock at door...my kid opens it...). Anyway- there was nobody at the door! Jaysen looked down- "Wow! Candy!!!" Huh?

Sure enough, there was a bag of goodies left on our porch, with this poem:

THE PHANTOM
The phantom haunts you happily, from now through Halloween,
and was delivered by a friend, who hopefully was not seen!
The spirit of the neighborhood, has come to wish you well
Someone, somewhere selected you, to receive this happy spell.
You must display the phantom on your door so all can spy
That you're already haunted by this happy little guy.
Then fix three sacks with goodies, like the one given to you,
Ring someone's bell and leave a bag, and make them happy too!

How cool is that?!? Someone chose to "haunt" Jaysen for Hallowe'en! He is totally digging it too. We're going to make our goodie bags and drop 'em off to unsuspecting neighbors tonight. I love this neighborhood. On Hallowe'en, they have a "costume parade" where all of the kids start at one corner of the subdivision, and parade throughout the neighborhood. At the end of the parade, dinner is provided. Not just snacks...dinner. After dinner is the official Trick-or-Treating kick-off. Fun!

Yet another doctor.

I had been having some concerns with Jaysen's reactions to medication. He was doing so well on the Risperdal, but had to stop because of the Tardive Dyskinesia. Seroquel proved to be ineffective, yet still produced the TD results (although a different movement).

After talking with his psychiatrist, she was under the impression that the movements included some form of tongue movement. When I corrected her, she looked puzzled. (To which I looked right back at her like, "why are you looking at me like that- you're the psychiatrist. You tell me what's going on!")

"So...Jaysen didn't move his tongue like this?" (she wags her tongue like she's trying to lick her cheek)

"No. Just his jaw."

"But the first time, his tongue was moving outside of his mouth, like this." (wags tongue again)

"No."

"I'm talking about the first time. With the Risperdal."

"I know. The first time was this fish-face thing."

"No tongue?"

"No tongue."

"Hmmmmm....."

She looks perplexed, thinks for a moment, then writes down the name of another doctor. Apparently, this guy is not only a neurologist, but he's a Movement Specialist. I guess they're hard to come by, because this is the only one that the psych knew, that was even anywhere near us. From what little research I was able to do, he's going to hopefully be able to tell if the movements are part of the ASD, a separate disorder themselves, or a result of the medications? That would be awesome.

There is a catch also. Of course there is, because why would anything go smoothly when it comes to Jaysen? This new doctor is not pediatric. Matter of fact, the first time I called to make an appointment, they turned us away because "he doesn't see kids". The psychiatrist had to call the office and ask him to please see Jaysen, as a favor to her.

I'm curious if there are any other cases of Tardive Dyskinesia out there, and what other avenues were sought. I do have to admit, if I'm being totally honest, that I miss the "Jaysen on Risperdal". I would love for him to be that happy, open, and aware again. I don't want to get my hopes up, but maybe this Doctor will be able to tell if he could try the med again. It might sound awful to some, but you didn't see my kid when he was taking it. Trust me- I battled myself whether to put him on it or not.

Has anyone else had any experiences with a Movement Specialist?

Best birthday ever.

Yes, it's true! Jaysen had his best birthday ever.

He had a little party at school, where I was later informed that he passed out donuts (and licked his fingers between passes...gross...). He stood at the board, and not only let the kids sing Happy Birthday to him, but beamed as they did. He then blew out the candles with his "rocket" eraser. The excitement sent him laughing and spinning.

But that's not all!

The festivities continued at home, where things got even better! I was a bit worried because although I wanted to keep it small (his party is this Saturday, and it was a school night after all), the number of well-wishers kept growing.

Jaysen did very well waiting until after pizza to open presents. He loved everything he got:
A Pop up Pirate game, car crafts, and a hat and scarf from Ex.
A Moon Sand adventure set and refills from Aunt Sissy.
A digital camera and cash from Moppi and Peepa.
A card and a check (towards a bunk bed) from Gramma Betty and Grampa Ron.
Pajamas and a check from Auntie B.
Little Einsteins: Rocket's Firebird Rescue and a Spongebob paddle ball from Rylan.
Aqua Dots starter set and refills from Companion.
And of course, a Scooby Doo pop-up book and the Baby Einstein 4-pack (volume2) from me.

Then was cake time. Jaysen sat down at the table and told everyone that he didn't want us to sing to him because they sang to him at school. No singing and no clapping. I made sure everyone understood. If you sing or clap and wreck this, I will consider stuffing your body down the garbage disposal.

However, I think Jaysen sensed there was some segue needed, so he told us to clap six times. On his count, we clapped six times, he said "Happy Birthday" and proceeded to blow out the candles. He questioned as to why there were 7 candles on the cake, I told him the big "6" candle was for good luck. He pondered that for a moment, said "good luck!" and blew it out. It was great. Nobody screwed it up, and I could just see the relief and joy on his face.

Later that night, Companion and I were just blown away at how great the evening was. We totally wanted to do it again. gives me big hope for Saturday, but even if Saturday doesn't have the same success, it's fine. This not only tolerant, but enjoyable birthday will go down as one of his "firsts".


Thank you everyone, it truly was the best birthday ever.

Bring on the birthday.

HAPPY BIRTHDAY, SWEETHEART!!!

Jaysen's been super-excited about his birthday this year. He woke up this morning in a great mood, got dressed without too many prompts, ate breakfast, and was happy to see my Mom when she arrived. That's about where the festivities ended.

"Hi Moppi!!! Do you have something for me??!?"

"Yesss...I have something for yooouuu".

At this point, Moppi hands Jaysen a small glittery bag. Jaysen opens the bag and pulls out...
...an Arthur computer game and a box of crayons.

"Mmmmooppii!!!!! (Insert gutteral growl) I DON"T LIKE IT! GET OUT OF MY HOUSE RIGHT. NOW. MOPPI!!!"

And the bag (and its contents) go flying across the room.

I scowl at my mother. She should've known better. I know she felt bad that he didn't "like" her "present", and she tried to explain that she just brought that over this morning, and his real present was coming this evening when we had pizza and cake. Still-He is expecting a video tape. You know that. I'm not saying that you have to get him one, just be prepared that he is not going to be happy about pretty much anything else. (and c'mon...an 8 pack of crayons?)

She wants so badly in her heart, to pull him away from his VHS obsession, but mom...it is stronger than you.

She called around lunch to tell me that she was on her way to the store to get him a Fisher price digital camera (he'll dig that). I could tell in her voice that she was let down and sad. She had been beaten, because her real presents were the game Operation (he may dig it, I dunno), and some educational puzzle or something. I'm sorry, mom, but no matter how badly you think he "needs" to play with a puzzle of the United States, or a math workbook- it's ultimately up to Jaysen if he wants to play with those things. And chances are...he doesn't.

Back to the story-
So the rest of my morning was spent hurrying around trying to gather the necessary things for school, since Jaysen had pretty much shut down. He would yell "It's NOT my birthday! DON'T sing the song to me!" whenever I tried to talk to him.

We did eventually get out of the door, and to the donut shop for donuts for the class. We were running late. Trying to hurry through routine is not fun. We ran down the hill to see the last of Jaysen's classmates entering the school. "Wait for me!" he screamed as he ran to catch up. He was too late. We went in the front of the building despite his red-faced protest that he was going home, tears streaming down his face.

I asked him if he wanted me to take him to see Resa or Miss R (sp.ed or reg.ed). He said Resa. I led him to the Resourse Room. Of course, she wasn't in her office. Crap...okay, let's go see Miss R (gulp).

He protested the whole way to class. Reluctantly, he handed his folder to his teacher, and went into the room. I started to get into his morning, but his teacher stopped me with ..."He'll be fine". Okay! That's all I needed to hear! I said a quick "ThankyouverymuchI'mlateforworkthere'sdonutsfortheclassinhisbackpackcallmeifthere'saproblem" and bolted out the door.

I am at work now. I am safe from the birthday wrath.
When I get home from work, I will be armed with pizza. I will also have cake.
The best part is...when it comes time for presents? I am prepared with the 4-pack box set with Neighborhood Animals, World Animals, Baby Mozart, and Baby Van Gogh.

I am Mom.

I am ready.

C'mon birthday...bring it on.

Out of my mind

After an arduous evening (longest 2 and a half hours of my day), Jaysen and I read a book, then lay down to go to sleep. That's when I heard it.

Smack-smack-smack. What the heck is he doing?

Smack-smack-smack. I prop myself up so I can see Jaysen's face. Smack-smack-smack-smack. He's smacking his lips. Did he not rinse good enough after we brushed? Is he thirsty? The smacking continues.

"Jaysen, do you want some water?"

"No."

Smack-smack-smack. Now I am noticing that the smacking is accompanied by a new mouth-movement. This movement is like he's getting ready to say something, then his mouth closes.

Open-close. Open-close. Open-close. Smack-smack-smack.

Shit- could this be the TD returning? It can't, can it? There's been no med increase, and he's even refused it on occasion.

Jaysen's always had some sort of tic (for lack of a more appropriate word), lasting from a few days, to weeks- But they've always been temporary. I first noticed them around age 3. First it was this eye thing. He would blink his eyes very deliberately in patterns. Then it was a breathing thing where he would shoot out air from his nose as if trying to get something out of there. Honestly, they didn't concern me because I knew why he was doing them. I couldn't explain why, but I knew...because I do those same things.

This is different (or is it?). This is something that bothers Jaysen, he is aware he is doing it, but not in control of it. There is a semi-control with my OCD's. I know I am doing them, yet I can't stop myself from doing them. However, I have trained myself to do them in a way that is unnoticeable to others. They're right out there for everyone to see, but I've adapted them so no one will.

Are these mouth movements something similar to that? Are they a temporary thing? Are they actually Tardive Dyskinesia? How do you know? How can you know?

An example is the fish-face. He is still making the fish-face, just not as frequently. He's been off of the Risperdal for long enough that it shouldn't be affecting him like that, so is the fish-face just a temporary tic that's hanging aroung too long for my liking- or was it really a side effect of the med? Is it something to be concerned about?

It's something that I feel I need to be sure of. I need to know for sure because this affects his meds, which in turn affects his anxiety, which in turn affects his aggression. He has an appointment with the psychiatrist in a few days, so I hope she'll know what the deal is. 'Cuz I sure don't anymore.

Birthday time again

As Jaysen's sixth birthday quickly approaches (gulp), I thought some "birthday etiquette" from Jaysen may be in order.

Birthdays, Jaysen Style: How to enjoy yourself at my party.

Don't be offended if I hide when you show up. It probably means I'm happy that you're here.

Don't be offended if I run up to the next person that shows up and shower them with hellos and affections. I probably don't know what else to do.

If I protest loudly when your kid shows up, it's okay. We probably don't like each other- he probably picks on me, and I probably annoy the crap out of him. Get over it. Mom said I had to invite the whole class.

Don't expect me to pose for a hundred pictures. You can stop with that "look, there's a bird on my head" crap, it just pisses me off.

When it's time for cake, you may try to sing "Happy Birthday"- however, if I start to get upset, please stop immediately. Do not continue just because it's a birthday party and that's what you do. I don't. It's my birthday, and if I want you to shove the song up your a**, I'm entitled. (Hey, I may even wish for it).

I would like videotapes. I will open presents depending on the probability of it being a tape. I will probably be upset if it is not a tape, and may even throw the item at the giver. Don't be hurt or offended, I really thought it was a tape.

Above scenario will continue until:
~desired tape is found, upon which no other presents will be opened, and my attention will be expressly devoted to my new acquisition.
-OR-
~the last present is unwrapped. If desired tape is not within pile of discarded presents- party's over, you may as well go home, 'cuz that's where I'm going.

Don't be sad that you didn't know what the desired object was...nobody does. It's a secret. Not even Mom knows. Heck, I may not even know until that day.

DVD's run a close second to tapes. I like them too.

If I am getting anxious, don't crowd me and ask me a bazillion questions on how you can help. I don't know! If I knew, I would do it! Just leave me alone and let Mom take care of it. It will be okay.

Despite everything else, I will have a great time at my party, and I hope you will too! Thank you for coming, and if you feel the desire to send me a tape in the mail to redeem your crappy present of a Tonka truck...feel free.

Thank you, I will have a Happy Birthday.

A tale of two teachers

I am in an interesting predicament.

It has come to my attention that there is an argument going on between Jaysen's General ed. teacher, and his Special ed. teacher.

The scenario:
Jaysen does not like to be pulled out of class. Nor does he enjoy being observed (neither would I). He sees his Sp.ed teacher as "the punisher" (probably because she would come and get him from class when he would have behavior issues, so he equates her with doing something wrong), and he does not want to be different from the rest of the class.

The sides:
General ed teacher: Thinks Sp.ed teacher is disruptive and upsets Jaysen. She thinks she can handle Jaysen, as he has "wonderful days" in class, and she is able to provide what he needs in class. She thinks Jaysen gets pulled out too many times, and he should just be left alone to blend with the rest of the class. She is willing to meet with Sp.ed for 10 minutes to discuss pulling him out for services.

Special ed teacher: Thinks Gen.ed teacher is out of her league. She says Gen.ed is unwilling to let her do her job. Jaysen is special needs, and those needs are "special" because Gen.ed can't provide them. He needs accelerated assignments. He needs social skills group. He needs supports like visual schedules. Sp.ed teacher has to work with him to get a baseline, so progress or regression can be measured. Sp.ed thinks Gen.ed is not working Jaysen to his potential, and he will regress. She will be pulling Jaysen out 3x's a week, regardless of Gen.ed's approval.

My issue? We have an IEP in a few weeks! These teachers better get their shit together by then. Sp.ed teacher has let me in on a bit more information than I'm sure she's supposed to, but I'm sure she has Jaysen's best interest at heart. I also think that Gen.ed has his best interest at heart. I just wish the two of them would be able to balance something out already.

(My money's on Sp.ed though. Only because she told me she talked to the district's "Autism Specialist" [who by the way is an absolute waste], and Specialist said to let her know what Sp.ed wants, because at the IEP, what Specialist says... goes. End of story.)

So here I am stuck in the middle of this. I see both sides, and I support both sides. I think Jaysen needs these services, and they are important. I also think his self-esteem is important, and if he feels uncomfortable about different assignments, it does concern me.

Here's an example-
Gen.ed teacher keeps correcting his writing. Jaysen's been writing letters since he was 2 and a half. He writes beautifully on regular lined paper. They use "3 line paper" in 1st grade. He sees it as one big line. He can't differentiate that the middle dotted line is a separator, so he writes very large and sloppy.

Sp.ed knows that Jaysen can write well on regular paper, and wants him to be given regular paper in class. Gen.ed doesn't want to give it to him because he gets upset, and wants the same paper as the other kids. I see both points.

So which do you back up in the IEP meeting? Is there a way to advocate for both without sounding wishy-washy?

Insight and advice is greatly appreciated!

Why I use a capital "A" for Autism.

I've recently been asked why sometimes I capitalize the word autism, even if it's in the middle of a sentence. Here goes.

In college, I majored in Sign Language Studies. In the very beginning, we learned that there is a difference between being deaf, and being Deaf. Put simply, deaf (with a lowercase d) refers to an audiological impairment. It is generally understood that deaf individuals may utilize some services, but they still identify themselves with the hearing world.

Deaf (with a capital D), is a cultural distinction. It is a term applied, regardless of degree of hearing loss) to those who grew up in the Deaf Community, their primary language being ASL (American Sign Language). People who are Deaf, do not see deafness as a disability, so much as a way of life. By capitalizing the "D", they are letting others know that there is more to the world than just the inability to hear.

I like to think the same views apply to Autism.

Autism (with a capital "A") to me, says that I accept my child wholly. I celebrate his differences and his quirky-ness. I advocate diversity. I try to empower him. I am proud of his successes, no matter how small they seem. I hope he holds onto the compassion he has in his heart into adulthood. I do not think he needs "fixing". I am proud that he is my son, and sometimes I am humbled by that very same thought.

I never want Jaysen to feel "dis-abled", that he can't do something because of autism. I want him to know that he can do it, he just has to find the way that he can. And if he can't do it- he should at least try. I want my son to grow up being proud of his accomplishments, learning from his struggles, accepting of himself, and celebrating his differences.

There is more to life than just being neurotypical.

Smugglers Blues

Let me just say, I am thrilled with the new traffic here at The Quirk Factor! It's really wonderful, and I'd like to give you all a big "Welcome!"

I also feel the need to post this disclaimer: I quit smoking on Saturday, so if things seem a little off...it's probably just me wondering if I am still alive, or if I truly made it to hell.

That being said, y'know how some people do "retail therapy" when they go out and buy something to make themselves feel better? Well, let's just say I went a bit overboard. What was my retail therapy? Ummm...a cat. Yep- I went out and got another kitty.

Jaysen and I were at the pet store to get Tikki some food. Jaysen likes to go and "see the cats", so that's where we went. There was a cat rescue at the store, so there were a lot more cats than usual. Jaysen played with two 12 week old Himalayan kittens, while I waited. Then I saw him. Wow...I was in awe. There was the biggest, blackest, furriest kitty in the whole place. I walked over to the cage and reached in to let him sniff me. He came right up to my hand and started to nuzzle. That was it- I was in love.

Problem: Jaysen wanted a Himalayan kitten. I wanted Mr. Big Black Kitty. I decided not to get any cats right then.

Later...
My parents took Jaysen to a petting farm. While they were gone, I beelined it to the pet store, and adopted Mr. Bigstuff. His name was Midnight, but c'mon...I can't have a black cat named Midnight, I gots a creative side. So there I was on my way home with Agent Cooper. (Cheers to any Twin Peaks fans out there)

That evening, I didn't tell Jaysen about Agent Cooper. I thought I'd just let him find him on his own. Well, I couldn't wait. Jaysen was drawing at the dining room table. I sat down next to him, holding Agent Cooper.

"Hey Jaysen, how was the farm?"

"Good."

"What did you do?"

"Went on hayride. I see a cow. I see lots of cows."

He was not looking up from his drawing. Hmmmm...

"Hey Jaysen, did you see this?"

Jaysen looked up, and his eyes got real big.

"You borrow the cat? From a store?"

"Yes, I bought the cat that we saw at the store. His name is Agent Cooper!"

"Cooper from a store?"

"Yes, remember we saw him at the store?"

"Mommy! You can't borrow him!"

I then realized Jaysen's distress. He thought I stole Agent Cooper from the pet store! Because he wasn't with me when I bought him, Jaysen figured I was sitting at home while he was out with my parents. The only logical solution in his mind was that since he didn't see me pay for the cat when we were at the store, I must have smuggled the cat out! (Awesome deductive skills!)

I was laughing so hard by now. I tried to explain that I did not steal the cat, but I went back to the store and bought him. I don't know if Jaysen actually cared by then- he was just happy that "I have 2 cats!".

Big black cuddly cat = $50
My son thinking I stole it = Priceless

Meow.

There is a cure for Autism!

...or so Jenny McCarthy claims in her book Louder Than Words.

The back cover of the book states that if someone you love is diagnosed with Autism, this is the first book you should read.

HELL NO!

If someone you love is newly diagnosed, this book will scare the SHIT out of you! Do not read it until you are fairly comfortable with the diagnosis!

Louder Than Words irritated me for a number of reasons. I got the first bad taste in my mouth from the book's introduction by Dr. Jerry Kartzinel, where he states:

"Autism, as I see it, steals the soul from a child; then, if allowed, relentlessly sucks life's marrow out of the family members, one by one. It relegates every other "normal" think to utter insignificance."

For sure something I'd want my child's pediatrician to tell me.

So, Jenny goes on doing everything in her power to "fix" her son, Evan,- as all of us moms would...right moms? Moms? You do want to fix your broken baby... right? Why are you all looking at me like that?
See, Jenny seems to think that there are categories for moms. You either fall into the category of the "I'll try anything if it will help my kid recover"mom, or the category of the "woe is me" mom, who doesn't believe in alternative treatments, doesn't want to hope, and may actually like being in the "victim role". Hmmm...I wonder which one I fall into?

Moving along...Jenny is so badly wanting to write this book as a typical mom, to other typical moms. However-she is not a typical mom...she is a celebrity.

Let's see...
She buys a heart monitor for $5,000 so she can have peace of mind while Evan sleeps.
When she had to take a plane to get to Evan in the hospital, she paid $7,000 for a ride in a private jet.
She enrolls Evan in exclusive programs and bypasses waiting lists because of her status.
She hires an in-home ABA therapist.
She hires a nanny.
She spends $4,000 a week in private therapies such as PT, Music, and Play.
She hires the top neurologist in the nation.
She has the best DAN! doctor in the world in Texas.
She has the best immunologist in the world in San Diego.
She gets funding through Autism charities due to the Autism expense.
The list goes on...

Wow! Sounds just like me! Except I'm broke, and can't provide that kind of "healing" for my son. Oh yeah, and I don't have connections to get me into the "top docs" or bypass the waiting lists out there. And I don't have the convenience of a nanny or in-home therapists. And that I've tried to get "assistance" and funding, but I'm told all too often that I "make too much" (at $29,000 a year). Funny...I didn't know I made more than Jenny McCarthy.

I'm not saying Jenny is a bad mom, I think she's a great mom actually. I'm just saying she's not exactly what you would call typical. She also claimed to have no resources. Right.

All the talk about treatments, broken children, drugs, and the time frame for recovery, is scary stuff- especially for a parent who has just received a diagnosis. It probably was best, the things Jenny and Evan went through. She admits that she didn't accept her son until he was considered recovered. Once she did though, she felt as if a weight had been lifted.

Some people have difficulty accepting a disability. If it's not typical, it must be broken-we have to fix it because it's not good enough like this. If a parent cannot accept their child as is, sees the child as inferior, incomplete, or in need of repair, the child will know that. That child senses that they are deemed something is wrong with them. Again, I'm not faulting people for feeling this way, but here's my point- In these families, I think it is best to seek out any sort of "recovery" you can. The bottom line is that a child has to feel a full part of the family, like a complete person, and have a healthy attitude toward life. If people need "recovery" to be able to accept their child, go for it.

I accept my son. He is a gift. Autism is a part of that gift, and not a part that got damaged. It's a part of him- and I love who he is, Autism and all. Is it an easy road for me? Hell no. Is it a journey worth making for him? Hell yes.