X-pression

Jaysen has always been "headstrong" to put it mildly. I have recently implemented the use of timers to try and give him an end time to activities and to aide in transition. Jaysen's language skills have greatly improved over the years, but he still lacks the ability to express himself, especially in times he's upset.


Conversation last night:

(timer rings) Jaysen is still playing a video game.

"Jaysen, it's time to turn the game off."

(silence)

"Jaysen, the timer went off. Time to turn the game off."

"No."

"Jaysen..."

"I don't want to turn it off."

"Well, it's time to."

"I said NO!!! Now go away!"

"Jaysen- do you want to get in trouble, or are you going to listen?"

(pause)

(crying)"I don't want to get in trouble!"

"I don't want you to get in trouble either, so you should turn off the game."

(Turns off game and stomps off to his room)


Now- this may seem like a normal interaction with any bull-headed 6year old, but let me explain why this was a breakthrough.

A couple of weeks ago, Jaysen would have persisted and gone into meltdown mode. But he didn't. No, that's not the part that's huge.
Look closely.
Closer.
There.
Do you see it? Right after my vague ultimatum.
Jaysen said "I don't want to get in trouble".
This was the first time Jaysen used his words instead of having a meltdown.

In the past, he would've started throwing things, hitting and kicking.
I'm thinking now, that he may have done those things not because he was mad that I wanted him to do something, but because he didn't want to get in trouble.
(By the way, I don't even know what "trouble" is, but don't tell him that- whatever "trouble" is in his head, is probably much worse than whatever I could come up with.)

I was thrilled. Thrilled that he actually turned off the game, and thrilled that he let me know that he was upset (crying) because he didn't want to get in trouble. Oh happy day.

As far as a school update, his substitute teacher did start yesterday. He walked Jaysen out at the end of the day- Jaysen kicked him in the shin and promptly told him "not to come to school tomorrow". Hmm. No love for the sub.

When I dropped him off at school this morning, I got to meet him. He's uber-tall (around 6'7"), and very cute. Like *wow* kind of cute. Anyway, Jaysen walked in and Mr.Sub gave him a minute before saying "hi, buddy!" Jaysen just glared at him, he looked at me, chuckled and said, "he loves me". Awesome- at least he has a sense of humor. I explained a bit about Jaysen, and how humor is the way to reach him, and he said "great, we'll get along fine then." So I have faith that once Jaysen feels comfortable, he'll do very good by him.

Only thing that sucks is, now I have to start doing my hair before I drop him off at school. ;)

3 minutes 26 seconds.

This is the time it takes me to complete a VHS transplant.

What is a VHS transplant, you ask?
Ahh...prepare to be "wowed" with my crazy skills.

If you've been following this blog, you may remember that Jaysen's "obsession" is video tapes. Particularly the Baby Einstein series. He collects them, plays with them, talks to them, carries them around, sleeps with them, and occasionally watches them.

He has eight copies of Baby Mozart. Although technically, they are all the same- they are all different.

There is "White Baby Mozart" which has the title written in white lettering on the black tape. "Black Baby Mozart" has a white sticker with black writing.
"Red Baby Mozart" was a real treat- yes, white sticker with red writing.
"Little Baby Mozart" has the same layout as "White Baby Mozart", but the writing is smaller. There is also "Baby Mozart with the F period H period E period"- this would be the Baby Mozart put out by Family Home Entertainment, and has a little doghouse with the letters f.h.e. above it.

You get the idea...

One day, Jaysen must have decided he had found out all he could of the external world of his VHS tapes, and it was time to delve into the dark world of the inner-workings of tapedom. Armed with a small screwdriver, he proceeded to unscrew the outer shell of the tape (check the back of a VHS tape, and gosh darned, there are 5 screws), disassembling the tape to view the inner contents.

Maybe he'll be a surgeon one day, or expect me to be, because somehow, he got the idea that he wanted to open two tapes and wanted me to exchange their reels. The way he explained it was awesome- "Openna Dr. Seuss and openna SpongeBob. Then up, and inna switch (carefully demonstrating the exchange with two pointer fingers), and down into tapes". I asked him to show me again, just to be sure that was what he wanted, because lord help me if I desecrated his tapes. He confirmed.

The two tapes were already opened, so I removed the reels and replaced them into the "wrong" tape encasements. He was overjoyed. So overjoyed, that now he wants to transplant all of his tapes. The problem being that although he can open and disassemble them, he needs my help lining up the two halves of the tape encasement to reattach them. This takes time, and of course he picks the most inopportune times, like when I'm trying to cook dinner, or just before bed. However, through practice, I have become a video tape guru.

I know more about the anatomy of a VHS tape than I ever cared to know.
The innards of a video tape consist of two reels, two little metal tubes, one or two plastic tubes, a couple of tiny-itty-bitty springs, and two plastic pieces that I haven't yet figured out how to put back in once they fall out.


Consider yourself enlightened.
And pray for my sanity.

Let justice be served...preferrably with ice cream.

(This will be long, but should be fairly easy to follow in 3 parts)
I got a call last evening from V. She's the special ed supervisor over the elementary schools.

(Part 1)
"Hi, this is V, I'm calling on behalf of the principal."
(oh? now the principal is refusing to talk with me as well?)
"Hi there V".
"I wanted to follow up with you- Jaysen should have his substitute teacher in place for him next Tuesday."
"Awesome!"
"He doesn't have any formal training with ASD, but he's coming from the middle school and has worked with ASD kids and explosive behaviors, so Jaysen shouldn't be anything he hasn't seen before. I'm thinking this will be a good match because he is familiar with students with disabilities, and he's a gen.ed teacher, so he's also familiar with gen.ed curriculum. He'll be able to support Jaysen the way that he needs."
"That's great. I'm really excited about this."
"I also understand you've been concerned about Jaysen's seating arrangement?"
"Yes. I feel that by sitting him off in a corner, with no other kids around him, is reinforcing the message to the class that it is okay to segregate him from the group."
"Well, we're looking at this being a temporary placement."
"I don't care how temporary of a placement you're thinking. This is not right."
"I realize that we are punishing the victim here, but I don't see any other options. We're hoping to do this for a week or two, then ease him back in with the classroom seating."
"V, he's once again being punished for something that is not his fault. You can't keep allowing this to happen. He needs to be included with his peers."
"The problem is...Jaysen's relationship with his peers...is, well...extremely...fractured."
(No shit, lady. I wonder why that is?)
"I understand, but you can't tell me that you expect me to believe that every kid in that class thinks he's a monster. "
"Of course not."
"Then sit him with those kids. He told me last night that there were three kids in particular that were really nice to him. Why can't you take those three kids into the hallway and ask them who would like to volunteer to be Jaysen's helper? Then you have those kids that want to help, sit at his table. There's more room at the round table, and they will be able to see that the behavior is being handled by the sub, and they may even pick up on some ways that they can help Jaysen too."
"That's a really good idea. I hadn't even thought of sitting kids with him. I don't see any reason we can't do that."
(duh.)


(Part 2)
"Now, while I have you on the phone, I would like to address the anxiety concern."
"Yes, I'm aware of the concern that parents are feeling anxious about the situation."
"That's only part of it, V. We're now on the receiving end of sideways glances, kids being shuffled away from Jaysen, parents talking about us and confronting me about my parenting abilities and our home situation. This has got to stop."
"I agree. But sometimes confrontation makes things worse, just so you know. What would you like to do?"
"At this point, there has been too much damage done. If we ignore it, it's allowing it to continue. I think confrontation is the only option, and it needs to start with his teacher. I know firsthand that she has discussed issues concerning my son, to other parents- because it's coming back to me. She is the one who is creating this anxiety- she is the one who can lull it."
"I wasn't aware of that. It's hard to disagree with you, when I agree with you. Sp.ed or Gen.ed it doesn't matter. She can't be allowed to do that. I will talk with her and the principal tomorrow."

I hope she tears into her like Fat Albert into a bag of chips.

I want to feel a bit relieved, but every time I think things are getting taken care of- something else happens to double the drama. I am keeping my fingers crossed, but my guard is still up.


(Part 3)
Now check this out:
When I dropped Jaysen off at school this morning, I told his sp.ed teacher of last night's conversation. She advised me to keep tracking the conversations. She is keeping her own copy of her interactions as well. Then she said the strangest thing that actually gave me chills.

"If I end up losing my job over this, all of my documentation will then belong to you. I will help you take down the system."

*shudder*

There is way more to the story. She knows something. She apparently knows a lot of things that I don't. What the hell are they?!?

"I will help you take down the system."

Those words are haunting me.
Damn...I want to know.

Thinking makes my brain hurt.

About a month ago, I began yet another attempt of Autism awareness...this time, with Jaysen.

I am adopted. I've always known I'm adopted. I don't ever remember specifically being told I was adopted- it was just a natural part of life. I had blond hair, blue eyes, was adopted, had a sister... it was just part of me. This is what I was kind of aiming for with Jaysen.

I started out by asking him if he knew what Autism was. After about three times of me repeating the question, he finally responded,

"What is it, Mommy?"
"Well, it's one part of you that makes up you who you are."
"Like really happy?"
"Yes, Autism can make you really really happy (I'm thinking about his excited-flapping or when he bounces off the walls). Let's see what else I can tell you about Autism. It can also make some things easy for you, and some things harder."
"Oh."
"Like reading. Autism helps you be the good reader that you are. Can you think of anything else?"
"Okay Mommy, stop talking now."

So I did. I figured I should leave it on a positive note.
A couple of days later, he was playing a Pac-Man video game and said, "I'm really good at this!"
So I jumped at the chance again, and said "Yes, you are. I think Autism has helped you practice (I was thinking along the lines of perseveration here), and all that practice, you've gotten really good at this game". He thought about that for a minute, then said, "Yeah."

My plan is to throw in a few more positive examples for him, then start balancing it out with some difficulties. I do not want to make it negative. I want him to understand that Autism has brought him gifts, but also will make him have to work harder at other things. I don't want him to see Autism as an obstacle, but more like a challenge.

I don't know if I want to go down the path of "you're different" or "you're special" because for one, isn't everybody? And on the other hand, I don't want him to feel he is set apart from society. I'm trying to take the angle of "you are who you are".

As it stands now, I wanted to familiarize him with at least the word. If he has a word to associate with, maybe he won't be afraid of it when it starts to click. The kids at school all know what it is, he should too. I don't think he is ready to grasp the concept of Autism, or even relating it to himself. That's fine for right now. I want him to take it all in at his own pace. It's difficult because he doesn't see himself as different from the other kids, and he doesn't ask questions. If I bring up his tapes as an example, he feels badly because he thinks I'm belittling the tapes. I really haven't found a concrete way of relating it directly to him yet.

I could always throw him a "Surprise...You're Autistic!" party. Okay, maybe not.
Damn...I really wanted some cake.

Screaming babies

Rylan does not sleep. He screams.

Last night, while he was screaming...

Jaysen: I don't like that baby! Put him back where he belongs!
Me: Oh? And where would that be?
Jaysen: Put him back in you belly!

Yeah right. Like I want a screaming baby in my belly?!?
No thanks.

A wee bit of victory

I received a phone call from the Director of Special Education last evening. I am told that once this woman gets involved, your case has officially reached "big-shit" status. This woman is usually brought in for damage control. She puts out fires, and is the be all end all. She is the Special Education Deity.

Anyway, she had me on a conference call with the special ed coordinator of the elementary schools (whom I had already been working with through all this stuff), and she asked me how she can help. I went through all of my frustrations with the school, and she was really empathetic to what was going on.

She offered two suggestions. The first being to move Jaysen into an inclusive classroom and gradually phase him into the general education curriculum. I immediately argued this suggestion for two reasons. The first being that it is already mid-January. How do you plan on gradually phasing him into gen.ed with half the year gone- and then it will be summer? And secondly, last year, he was accommodated and had the appropriate support, and he absolutely thrived. I strongly feel he can do that again, if given the proper supports.

Her second suggestion was to hire a substitute teacher, who has had exposure to Autism, to be in the gen.ed room with Jaysen. Hmmm...tell me more about this option. A parapro would have to follow the instruction of the teacher. A substitute (who is a certified teacher on her own), would be able to direct and instruct Jaysen by whatever means she feels would work for him, without having to consult or follow the lead teacher. She would be able to support the lead teacher's instruction and be able to supplement his learning needs.

Now we're talkin'.

The topic of the meeting came up. She asked me what I would like to do about it- I didn't really have an answer. She mentioned that for some reason, this "case" has been blown up to a ridiculous magnitude. That there are a lot of anxious parents that don't want their kids around Jaysen, that are demanding answers as to why he is "allowed to act that way", and what is going on. I agreed that it's gotten way out of control, and offered my speculation.

My speculation was that his teacher is extremely anxious. She hasn't been the same since she witnessed a meltdown. She's afraid of Jaysen, and he makes her anxious. She is friends with a number of parents, so she confides in them about her anxiety. She doesn't understand him, so he's made out to be this kid that "goes off" at the drop of a hat, and a volatile monster threatening bodily harm. If that were the story I was hearing, I'd be concerned as a parent too.

The Director said that she felt that was what was going on too, but hasn't seen anything firsthand, and wants to be cautious about how she handles the situation. I can understand that, but this teacher has caused some pretty significant problems with my child, his education, his faith in the school system, and my trust. She needs to be beaten with asparagus spears.

She asked if I would like another meeting with the parents, to sort of plead my case. I told her that I didn't think that was necessary, since all of the parents were informed at the meeting just last week. If the parents still had questions or concerns, I would be happy to meet with them. She agreed, and said she was thinking the same thing, just wanted to give me that option. I also made her aware that in a meeting like that- should I be asked about his behavior, my answer will be "because the school has not provided him with the supports he needs, and he is reacting to his environment", and it will blow up in your face. She knowingly laughed and said she was afraid of that. All in all, it was a good conversation. She is aware of the issues now, and Jaysen will have full accommodations in about 3 weeks- that includes the time for the FBA and all that jazz.

The addendum to his IEP meeting is tomorrow, and I fully intend to take whatever advantage I can. I'm asking for everything. Maybe I'll even have them write that they have to provide coffee for me every morning when I drop him off. Now there's an IEP goal: Jaysen will make a perfect pot of coffee with 90% accuracy. When that goal is achieved, he can move on to cappuccinos. Mmmm. Coffee.

There is a bunch of shady stuff going on internally too. Jaysen's sp.ed teacher called me, extremely upset, that they are threatening her job. They informed her that they will not be renewing her contract at the end of this year. The reason? she feels it's because she's fighting for Jaysen so hard, and the principal thinks her loyalty should be with the school, not the student. But- they're not that stupid. They're telling her it's because of how she writes an IEP, her documentation, and the fact that she is late picking students up for their Resource Room time (because she's busy trying to diffuse Jaysen). She is a wreck, and I am too. I told the Director that the sp.ed teacher is instrumental in Jaysen's education. She is the only familiar face from last year, she gets him, and he trusts her. She knows how to reach him, and he performs. I had to be subtle, and slide the stroking in where it would fit the topic of discussion, because remember...we're not supposed to be talking. So- my stress level is up once again, just with the thought that she won't be there next year. Yes, they could get another one in who's just as good, but she really fights for him. As long as Jaysen's with her, he's safe from being ridiculed and punished for his quirks. Now, don't think this woman is totally flawless, but the bottom line is, she advocates for my son while he's in school and I can't.

Anyway, I just wanted to share that little ray of sunshine peeking through- that he is finally going to get some support. Whoot whoot!

HIPPA-potomous

Yesterday was the day the school social worker was to present to Jaysen's class about Autism. When we discussed this presentation at the meeting on Wednesday, it was to be an informal, nondiscriminatory way to introduce Autism Awareness and sensitivity training to his classmates (while he is still on suspension), talk about his strengths, and talk about ways the kids can support him in the areas he needs support.

The problem? There were several parents in attendance.

Yes, I think it is a good idea that parents are informed and aware as well as the kids, however, parent attendance was never discussed with me. If I had known parents were going to be there, I would have been there to answer any questions from a parent-to-parent perspective. It was my impression that this was going to be a "safe" place to talk about what it means to be Autistic, where the kids would be able to ask questions and receive clarifications regarding their concerns. I was furious.

Here was my e-mail to the principal and the director of special education upon finding out:

I am aware that the Autism awareness discussion with Jaysen's class was held yesterday, I would love to know how it went. At our meeting, we discussed the purpose of this presentation was to provide Jaysen's classmates with sensitivity training and education about how Autism affects Jaysen, to foster more positive social relationships, and to reassure them that things are under control.

It has come to my attention that parents were also in attendance. I do not know who authorized this decision, who invited the parents, how they were notified, or why I was not invited as well. If the intent was to have parents present, it should have been discussed, and I should have been notified. Had I been notified, I would have been there to represent Jaysen, and answer any questions parent to parent.

I want you to be aware that this is a breach of Jaysen's confidentiality under FERPA law. I gave permission to discuss Jaysen's Autism with his classmates and teachers. I did not give permission to hold an open forum about my son. I expect this issue to be dealt with accordingly.

The principal responded that I was correct, several parents did attend the discussion, although she didn't know they were going to be there. She said they were neither notified nor invited, and she didn't know how they knew there was going to be a conversation at all. She apologized, and said they should have asked the parents to leave the room while the discussion took place. She assured me this type of situation will not happen again.

Is it just me, or is this not enough? Are you planning on finding out how the parents were "invited"? Isn't it obvious to you that his ignorant teacher was the one who tipped the parents off to the freakshow as they dropped their kids off that morning? If you weren't expecting the parents, why didn't you clear the room? This is absolute bullshit. I am so glad he wasn't in school.

My advocate says not to get my panties in a bunch. I should look at it for what it is. Parents are now informed too, and now...the district "owes me one". She suggested not to file a formal complaint, and now is the time to ask for the big stuff. I took her advice and wrote a letter to the director of special ed, and asked for his teacher to receive immediate training, and a Functional Behavior Assessment (that they still haven't completed) with the assistance of ISD. ISD is the Intermediary School District, and they are supposed to know their shit. They're who you call when your district isn't cutting it. It's also difficult to get their involvement because honestly, they have more important things to do than other people's jobs. On Monday, I am going to write a letter requesting Extended School Year (ESY) services, and an IEE at their expense.

Still, that only makes me feel a tiny bit better. This is so wrong. The advocate is right, that I have to play nice because Jaysen's only in 1st grade, and has a lot of years left at this school. I'm just sick of all of this. At what point does it become discrimination? At what point does it become too much? At what point do people consider that there is a real child with feelings here? My friend suggested I confront the teacher about it, but I'm too afraid they'll end up calling the police because they found out just what a combative mom really is.

In a bit of humor, the other autism-mom at Jaysen's school, left something for me in Jaysen's backpack. It's a note on a heart-shaped piece of paper that says "I've been thinking about you, I hope you're doing okay. I remember mentioning this book to you. I think you will enjoy it. I couldn't put it down. I'm here for you."
And it was stuck inside...a copy of Jenny McCarthy's book.


She apparently doesn't read my blog.

Whose rights?

Once you take away the legalese and the fancy fluffer-stuff, what it boils down to is- because of Columbine and "Zero Tolerance"- The school has 10 "free days" where they can suspend a child for any reason. When I say any reason, I mean any reason.

Case in point:
The principal acknowledged that she is aware that Jaysen's disabilities caused him to react to his environment the way he did. She is aware that the school has not provided the supports he needs. Supports that are in his IEP. She knows that what he said was not said with intent. She admitted to suspending him because of his disability. And it's legal. It's not very ethical, but it is legal.

Me: So when can Jaysen return to school?
Principal: Umm...well, we have to get the behavior plan up and running...
Me: We're here to finalize that today, so he will be back tomorrow.
Principal: No, he can't come back tomorrow. He can't come back until the staff feel comfortable implementing the behavior plan.
Me: And how long will it take staff to feel comfortable?
Principal: Well I just don't know. His teacher still has to go for training, and we have to find a substitute for that to happen.
Me: (How that is supposed to be my problem, I don't know.) I see.

Me: Regarding the incident, why wasn't the social worker called down to pull him aside and problem-solve? Maybe if someone would have tried to find out why he was upset, they would have gotten to the real issue?
Principal: Well, I don't know... I don't even know if...hmmmm...was she in the building...with a student...oh- she wasn't in the building that day.

Me: So you suspended him without allowing him to give his side?
Principal: Yes. I had to suspend him because he can't say things like that.
Me: But you don't have anything in place to give him support with his expressive language.
Principal: I know.
Me: You understand that he uses scripts, and could have complex vocal tics as well.
Principal: Yes.
Me: And you understand that his verbal expression is limited, and his tics are involuntary.
Principal: I understand that.

Me: You realize he was just reacting to his environment.
Principal: Yes he was, but it's a general education classroom. People are going to do things like take pictures.
Me: And I'm not saying they shouldn't do things like that. What I am saying is, that you have a student with disabilities. A part of the disability is sensory hypersensitivity. You and the teacher need to be aware of this. It doesn't take any more of an effort to let him know you're going to take a picture.
Principal: I know that, but if he's that sensitive that the teacher can't even take a picture, maybe we need to discuss alternative placement for him.
Me: Remember, you haven't provided supports yet...
Val (director of Sp.ed): (who knows where I was about to go with this) What she's saying K, is that we need to be more aware of the environmental factors that could be potential triggers for Jaysen, and acknowledge that something may be triggering a behavior that we're not considering.
Principal: (silence)
Me: (smile)

Principal: It's about the other kids. I know there was no intent in what he said, I suspended him because the other kids in class became very upset when he threatened the teacher.
Me: Which we still don't know he actually did.
Val: (interrupting out banter) When will Jaysen be able to return to school?
Principal: (long re-grouping pause) Umm...I'm thinking the very earliest, would be Friday.
Me: So you're still denying him access to an appropriate education until at least Friday.
Principal: Yes.

Me: Let me make sure that I'm understanding this clearly before I have to leave. You are agreeing that you suspended him for something that was due to his disabilities. You are also acknowledging the school has not yet provided him the necessary supports to effectively help him succeed, and this directly effects his behavior.
Principal: Yes.

*blink blink*

Did she just admit to suspending my son for his disabilities?
Yep. And apparently she can do it for up to 10 days.

So, when I got to work, I sent her an e-mail requesting she write a supplement to Jaren's suspension letter, stating that she acknowledges that the infractions were made without intent, and her decision to suspend was based on his classmates being upset. I requested the letter be attached to his suspension letter in his file, and a copy sent to me.

She has yet to respond.

And it just keeps getting BETTER.

They suspended him.

The fucking school fucking suspended him.
Fuck, fuck, fuckitty fuck fuck.
Sorry.

Jaysen had an awesome day today, until the very end of the day when it was time to go home. The teacher was taking a picture or 2 girls wearing the same shirt, when Jaysen, just out of nowhere, started crying, and said that the teacher hit him. He then said "I'm going to kill you".

Now- when I talked to Jaysen about this incident, he (of course said nothing first) told me he said "I'm going to tell you". This is exactly a phrase that he uses when he's angry. Although there were two witnesses that heard "kill", the sp.ed teacher thinks that they misheard "tell" for "kill", since he was obviously upset and crying when he was saying it.

The sp.ed teacher was not in the room, but is speculating that the flash from the camera hurt Jaysen's eyes, and he was reacting from the flash. "You hit me" is something that he says when he thinks you did something mean to him. If it hurt him, you "hit" him. This makes sense to me too. But, as I stated, the sp.ed teacher was not in the room, and the witnesses say that there was nothing that prompted the initial crying outburst. Whatever. There is always something that prompts it- you just may not have caught it.

So, the principal calls me at home to tell me Jaysen is suspended until they can get a behavior plan in action. I voiced my frustration that I've been asking for support for months now, and nothing is yet in place. I voiced that he's being suspended for communicating inappropriately, even considering that he has expressive language issues. She confirmed, and said that they cannot have a student accusing a teacher of hitting them, and using threats.

I'm upset that my son is now on suspension, but I'm even more upset that they're telling me that he's being suspended for his communication. To me, that's borderline discrimination. Or am I overreacting?

Fuck.

Losing my mind...

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

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

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

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

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

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

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

But he did so well on it...

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

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

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

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


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

I love you too.

Cuddling at bedtime:

I gave Jaysen a squeeze and whispered, "you...are my sunshine."
To which he whispered back, "and you are my moon."

Here's to the new year.

2007 was a rough year. I could recap, but I'm hoping to start the year in a positive light. I am looking forward to starting 2008 with a fresh look and a new energy. I have no "resolutions" because I am not setting up any expectations. I have learned that if you do not reach a goal, it can lead you to disappointment. If you achieve a goal, you tend to stop there because the goal has been met. Goals can be limiting as well (think IEP?) By not setting specific goals, I am hoping that I will strive my farthest, and surpass any "goals" that I may have set.

Jaysen goes back to school tomorrow- he's not thrilled in the least. I tried to tell him that there will be some changes when he returns (he's supposed to have a 30-day parapro, as well as a new behavior plan), but he wasn't having it. "It's January?" he asks. "Yes, it's January". "Nooooo!"

The universities in my state, are trying to pass a new degree. I don't know much about it, but it's supposedly a "degree in Autism" of sorts. I have to find out more information about it, but I'm really considering going for it. My current degree is in Sign Language Studies- Although I have always loved Sign and the Deaf Community, I was horribly misled about the marketability of my degree. It's a long story that perhaps I'll get into another time. Going back to school right now, would be very difficult for me. I have Jaysen, and a baby. Although I work full time, my financial situation is less than desirable. Would Jaysen be able to handle me being away at class (he has become SO clingy)? Would I be able to study or write papers? I really don't know. I just feel that if there is a way that I could help Jaysen, and students that will follow him, I need to at least try.

My heart really lies in advocacy. It always has. I have always taken up for the "underdog", even as a child, and advocacy is something I have always loved. The problem is- advocacy is a "volunteer" position. I would love to be the support to people (and in my case, parents)- Yes, I will fight for your child. Yes, I will go with you to meetings and IEP's. Yes, I will educate you about your rights. Yes, I will educate the schools about your rights as well. Yes, I will work with the team to provide a program where your child can thrive. Yes, you can call me at home for any reason. Blahbitty blah. The truth of it is, though- I need a full time job, with benefits. We all know the expense involved raising a child, especially a "special needs" child, and I couldn't do it on a volunteer basis. Why is money such an issue? Why can't we just go back to trading beads? I have lots of those. I'll trade you two shiny purple beads for this book? They're really shiny.

Oh well. It's a thought.

Happy New Year everyone.
May this year hold the best and brightest for you and your families.