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. :)