Saturday, April 26, 2008

(The) Power of attorney

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

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

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

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

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

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

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

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

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

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

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

Friday, April 25, 2008

Prince Charming

My son...the charmer.

*sigh*

Hand over my heart

Six hours.

Six hours is the time we spent yesterday, working on just the BIP (behavior plan). We never even got to the IEP. My brain has officially turned into Jello. The kind with the little chunks of fruit in it.

I ended up hiring an attorney to accompany me to the IEP, and he went over everything with a fine toothed comb. I'll get more into that later, because I have to get to work, but I have something FANTABULOUS to share...

After I dropped Jaysen off at school, I went back to my car to get my coffee and my daunting "Big Black Bag of Advocacy". As I re-entered the school, I saw Mr.Sub and a little blond head in the office.

Oh shit- I've been gone for a whole 5 minute. What the hell is he in trouble for already???

I tried to hide in a corner so I could watch. I saw Mr.Sub point to another kid. Jaysen turned and followed the kid around the back of the secretary's desk. Where the loud speaker is. I heald my breath.

Holy crap...he's going to do the Pledge.

So I ran to the Social Work room to hide out (remember, if he sees me at school, his day is done). We waited a bit and sure enough, his name and another kid's name were announced, and...he did the pledge!

My son did the Pledge of Allegiance!

I was so proud, I got all teary. I was so happy that I was actually there to hear that.

It was a good day.

Thursday, April 24, 2008

Memo to Jaysen

Dear Jaysen,

You smell like monkey-feet.
Stop playing Mario, and take a bath.

Love,
Mom

Tuesday, April 22, 2008

Instinctual gender identity?

Conversation last evening...

"Ugh- I despise picking out my clothes for work. Hey Jaysen- what do you think I should wear to work tomorrow?"

"How about a pretty skirt?"

(Ugh- a skirt) I retreat to the recesses of my closet and produce 3 options for him.
"Okay, which one of these?"

Jaysen inspects all 3 specimens carefully. "Uh...the flowers!"

"That's a great choice, thank you for helping me out!"

"Yeah. You wear a skirt, and your 'work-man' (bossman) will be so happy and proud."

Erp?
Is my son inferring that my boss would appreciate it of I dressed more girly?
Things that make you go hmm.

Sunday, April 20, 2008

Intimidation station.

I just got off the phone with the Special Services Coordinator. She has been investigating the mystery of "The Teacher Who Wouldn't Talk", as Jaysen's teacher has been avoiding me for oh...about 4 months now.

It turns out that Ms.Gen.ed is intimidated by me.

Whaaaaat?

Personally, I find that hysterical, since I've never been anything but professional towards that woman. This just shows what an overreacting actress this spineless twit truly is. She's afraid to talk to me alone, without a union rep. Union rep? What does she think I'm going to do? Stab her with a spork? In school? You've got to be kidding me.

She accused me of doing something that justified her fear, but the Special Services Coordinator wouldn't tell me what it was. Oh...it must have been that time I summoned the Dark Forces and shot laser beams out of my eyes.

Boo.

Friday, April 18, 2008

Just one of those days...

An actual letter sent to Proctor and Gamble. Worth the read.


Dear Mr. Thatcher,
I have been a loyal user of your 'Always' maxi pads for over 20 years and I appreciate many of their features. Why, without the Leak Guard Core or Dri-Weave absorbency, I'd probably never go horseback riding or salsa dancing, and I'd certainly steer clear of running up and down the beach in tight, white shorts. But my favorite feature has to be your revolutionary Flexi-Wings. Kudos on being the only company smart enough to realize how crucial it is that maxi pads be aerodynamic. I can't tell you how safe and secure I feel each month knowing there's a little F-16 in my pants.

Have you ever had a menstrual period, Mr. Thatcher? Ever suffered from the "curse"? I'm guessing you haven't. Well, my time of the month is starting right now. As I type, I can already feel hormonal forces violently surging through my body. Just a few minutes from now, my body will adjust and I'll be transformed into what my husband likes to call "an inbred hillbilly with knife skills". Isn't the human body amazing?

As Brand Manager in the Feminine-Hygiene Division, you've no doubt seen quite a bit of research on what exactly happens during your customers monthly visits from 'Aunt Flo'. Therefore, you must know about the bloating, puffiness, and cramping we endure, and about our intense mood swings, crying jags, and out-of-control behavior. You surely realize it's a tough time for most women. In fact, only last week, my friend Jennifer fought the violent urge to shove her boyfriend's testicles into a George Foreman Grill just because he told her he thought Grey's Anatomy was written by drunken chimps. Crazy!

The point is, sir, you of all people must realize that America is just crawling with homicidal maniacs in Capri pants... Which brings me to the reason for my letter. Last month, while in the throes of cramping so painful I wanted to reach inside my body and yank out my uterus, I opened an Always maxi-pad, and there, printed on the adhesive backing, were these words: 'Have a Happy Period.'

Are you f*cking kidding me? What I mean is, does any part of your tiny middle-manager brain really think happiness -- actual smiling, laughing, happiness is possible during a menstrual period? Did anything mentioned above sound the least bit pleasurable? Well, did it, James? FYI, unless you're some kind of sick S&M freak girl, there will never be anything 'happy' about a day in which you have to jack yourself up on Motrin and Kahlua and lock yourself in your house just so you don't march down to the local Walgreen's armed with a hunting rifle and a sketchy plan to end your life in a blaze of glory.

For the love of God, pull your head out, man! If you just have to slap a moronic message on a maxi pad, wouldn't it make more sense to say something that's actually pertinent, like 'Put down the Hammer' or 'Vehicular Manslaughter is Wrong', or are you just picking on us?

Sir, please inform your Accounting Department that, effective immediately, there will be an $8 drop in monthly profits, for I have chosen to take my maxi-pad business elsewhere. And though I will certainly miss your Flexi-Wings, I will not for one minute miss your brand of condescending bullsh*t. And that's a promise I will keep. Always....


Monday, April 14, 2008

Waiting for the fat lady to sing...

Over 3 hours, and we barely got into the "goals" section of the IEP. Needless to say, we had to reschedule to finish, so the IEP is not yet complete. Nothing changes as of yet. There was so much time wasted on the verbiage of the "supplementary" and "related" services, but those are important too, and I wanted to make sure I had his BIP addressed in the actual IEP somewhere. I wanted it written in that he will not be removed from Gen.ed unless he reaches a "level 3" on our 5 point scale, and when he is removed, for any reason, that reason will be clearly documented. And I wanted to make absolutely sure that he was taken to someone who is familiar with Autism and its language aspects, before any disciplinary action was taken.

They fought me on that one, but the Social Worker (who has 2 Autistic children herself) knew what I was getting at and made them write it in. Yay for her!

Then there was another huge waste of time when I argued the Team (mainly the SLP) that the goals had to be "specific and measurable", and the objectives are the steps taken in what the child needs to be able to reach that goal. She informed me that the goals are supposed to be broad because they cover the entire year. If goals were specific, we would have to reconvene the IEP every month or so. The "measurability comes in the objectives. I told her that wasn't my understanding, but I would check on it.

Referencing IDEA, the law states that the goals have to be "measurable". It actually states nothing about the specificity or broadness. So I suppose I made an ass of myself in a sense. Whatever- I'm over it. So now I'm stuck with crappy goals like "increase expressive and receptive language" and "increase pragmatics". Which is why I'm okay with the IEP being incomplete right now. It gives me time to refuel.

We also checked out 2 different schools. The Sp.ed coordinator said that both of the schools are more accommodating than the one we're currently at, and have more experience with disabilities and inclusion. They even include their Basic classrooms. That's cool. One of the schools is HUGE! I was lost as soon as we turned the first corner. It has 3 floors (keep in mind this is an elementary school), and 4 playgrounds. Unreal. It was well kept, but I don't know how Jaysen would handle the sheer size of the place. The principal seemed nice, but not as welcoming as I would have liked.

The second school was smaller (still bigger than our current school), seemed a little unkempt and dank, and it smelled like sweat. The principal was super cool though. He walked with us and talked about the school and the students- they have a LINKS program, which is like a peer mentorship that the reg.ed students sign up for to be the sp.ed students supports and buddies. That's cool too. The first school also had LINKS, but it's new to that school and more developed in the second one.

I didn't get the feeling at either school that "OH! This is the place for Jaysen!" but I don't know if I would, skeptic that I am. Incidentally, the district I wanted, stopped accepting applications April 2nd, and already finished their lottery. Lose.

So, I have some pretty big decisions to make in the next couple of weeks. Damn- why does his school have to suck?

Sunday, April 13, 2008

Meeting of the moms.

The meeting was strange...to say the least.
There was me and the 2 other moms, sitting at Starbucks.
It started off awkward, but I just dove right in.

One of the moms explained to me that most of the other moms were too irate to even speak with me- that's fine because I was hoping I could answer questions that these moms had, and it would eventually make it through the grapevine.

They wanted to know what I was doing about the situation. I explained that I think we have different situations, and that my fight is to get Jaysen back into the GE classroom. Neither one of the moms knew about the "Quiet Room" where Jaysen spends the majority of his day. I invited them to check it out the next time they're in the school.

We exchanged information- I was able to show my proof of letters and e-mails sent to various people, and they were relieved to see that they weren't the only ones the principal wasn't responding to. Basically, they thought the principal was not communicating to them because she was defending me. Hardly the case.

I had to explain that the school has funding to use for Special Ed accommodations, and that Jaysen's 1:1 does not take away funding from General Ed. They didn't know that either.

They asked about Jaysen's accommodations. What does he need? What does he have? Because they don't remember him having any major accommodations last year, or at the beginning of this year. I went through the scenarios about how if they would have intervened in the beginning, the accommodations would have remained minor. I described how Jaysen feels in the GE classroom, and the accommodations will be more now that they've gotten him used to the "Quiet Room", and a 1:1.

As they were listening to me, they started to understand just how unfair Jaysen has been treated. They're still concerned about their children too, of course, but the way the teacher and principal had been painting this picture of my son was totally inaccurate. The other moms are pissed because they feel their children aren't getting an education. I asked them to think about something- if your child is not getting an education, and my child hasn't even been in the classroom for almost 4 months, do you really think they're not getting an education because of Jaysen? Ah- I was almost blinded by the lightbulbs going off.

One of the moms asked how the parents were treating me. I let her know that people who used to say "hello" or "good morning", turn their backs to us and won't look our way. She looked at the floor and shook her head. We discussed how the kids treat him in the classroom. They said the kids have been forgiving, and don't hold much against him. That was good to hear. They want to know if I feel this will go away and return to normal next year with a different teacher. I didn't think so because his teacher runs her mouth to the other teachers, and they already have a negative impression of him. There are 2 second grade teachers. One doesn't believe in mainstreaming, and the other one is burnt out from having all of the sp.ed kids every year, and she's friends with his current teacher. He's going to start next year at a disadvantage regardless (His IEP is Monday, so I am going to make sure it is as strong as I can make it, so it will transfer schools well. We're also going to finally talk about other schools as well).

Basically, I kept it real and factual- gave props where I felt they were deserved, and disapproval where I thought it was necessary.

I wouldn't say I made 2 new friends or anything, but it was nice to talk to some parents that were receptive to the other side.

Momzilla did not have to come out and play.

Thursday, April 10, 2008

Long time, no post

Heh.

I can't believe my head has not exploded at this point. I'm learning this new medical billing process- I hit my deadlines! Am fantastic. I know.

Update on the school situation? Sure, why not.

Jaysen still remains secluded in the "Quiet Room", but now the Team has thought it time to try and reintegrate him back into the GE class. Ohmigod- it's brilliant. Wish I had thought of that. *Sarcasm*

His IEP is Monday, and I'm shining up my incisors. I'm planning on making this the "Mutha of all IEP's", and I'm not backing down until we get it. Everything shall be spelled out and specific, and there shan't be any ambiguity mucking up the intentions. I want to know who, what, where, when, why, and how. And it will be documented. And shiny.

Remember the crack-attack parents of the other students? Y'know, the ones who want to hang me in effegy and send my son to an institution? Well, I received a phone call from the Special Services Representative asking my permission for the Superintendent to address the Board of Education at the next Board meeting about Jaysen.

Huh? Why would she be talking about my son at a Board meeting?

It turns out that the parents have attended the last two Board meetings, and brought their concern about my son wrecking their kids' education, to the attention of the Board. Nice. My son hasn't even been in the class for almost four months. If your kids aren't getting the education you feel they should be getting...it's not because of my kid.

So I talked with Spec.Services for a bit, and agreed on what the Superintendent would say. She wants to tell the parents, "he's 6 years old and has Autism- get over it.", but we came up with something much more appropriate. I mentioned that if parents were going to be there, I would want to be there too. She didn't think it would be a good idea (she's afraid they'll gang up on me), and advised me to stay home and watch it on TV.

TV??? This circus is on television?

Yep. They televise the Board of Ed meetings on our local access channel. My cousin called and told me that she had seen the last couple, and she had this sinking feeling when the parents had the floor. She prayed that it wasn't Jaysen they were talking about like that, but it was. *ugh*

In short, no parents ended up attending that particular meeting, so there was no excessive drama. But the room mom e-mailed me and said the parents would like to meet with me this Saturday. I accepted, and asked her to pick the time and location. The room mom seems to be receptive to hearing this "other side of the story", I just hope the other parents will be as well.

In the meantime, I am studying up like a demon for this IEP.

Sunday, April 6, 2008

Saturday, April 5, 2008

How my eyes were opened.

Here's a little story about Autism awareness that hits close to home, because it's about me and my journey.

At about age 2, I began to notice that Jaysen didn't have the language skills that other kids his age did. Like many other parents, I brought my concern to the pediatrician, who told me not to worry because kids all develop language at their own pace- but I should stop trying to teach him Sign Language, just in case it was hindering his verbal language. Okay- I bought that for the time being, but it was still in the back of my mind.

When Jaysen started daycare at 2 and a half, I remember telling the staff that he has a pretty significant separation anxiety, has trouble with transition, and not to worry about his video tape- he just likes to carry it around.

About 6 months later, the staff approached me that although he was very smart, Jaysen didn't like to do things with the rest of the group, and did not like to follow direction. They too were concerned with his language development. I took him to see the district speech therapist, who diagnosed him with Hyperlexia. He did not begin therapy because she too, felt that he was still too young for concern. I researched Hyperlexia, and it fit like a glove.

As time went on, the daycare became more concerned. He did not eat like the rest of the kids, and was starting to exhibit meltdowns, and had I had him evaluated for Autism? I was extremely offended that they would even suggest that my son was Autistic. I've worked with Autistic kids for 6 years, and although they were awesome, it wasn't what was going on with my son. I knew something was going on with him, but it wasn't Autism. I took him to a pediatric neurologist. She talked to me for 15 minutes. Aspergers.

Asper-who? I started my research on Asperger Syndrome. It didn't fit. How could my son have Asperger's when one of the distinguishing characteristics was excessively loquacious? My son wasn't speaking more than one word requests.

I took him for another eval at another speech therapist. Expressive and Receptive Language Disorder. More research. Ahhh...this seemed to fit better. He started therapy. This SLP was wonderful. Jaysen loved her, and she worked really well with him. She had countless exercises for us to do with him at home, and the echolalia gradually began to fade. Real words were emerging.

Time went on with this therapist. It got to a point where Jaysen's behaviors were impeding her progress with him. He began working with her OT partner for sensory integration. They said he was quirky, and may be a touch on the spectrum, but it could also be that he would always just be quirky. They suggested I take him to a psychologist that they knew, who specializes in behaviors, just to see if it was quirkiness, or something else.

My initial meeting with this psychologist (who is also wonderful), was about Jaysen's history, development, and an all around feel for the type of kid he is. I expressed my frustration with people and the Autism thing. I never bucked these diagnoses because I didn't believe my son had issues, I just wanted to make sure he had an accurate diagnosis.

I asked him, "why can't he just be a Hyperlexic kid, has a language disorder, some OCD's, and sensory issues?" He said "He can. When those things come together, it's referred to as an Autism Spectrum Disorder."

And that was my A-ha moment.

He went on to explain that Autism wasn't the classic Autism that we all thought of. That it is a spectrum disorder. He explained the spectrum, and how these children can vary in areas across the spectrum. He explained stereotypes- "Flapping" didn't just mean flapping your hands or parts of your body, it was also those repetitive behaviors I assumed were OCD. Jaysen's official diagnosis was PDD-NOS but that's not the point of this post.

It took the right person to explain to me that Autism is more than the Autism we knew 10 years ago. It's more than a checklist of characteristic attributes. As I researched, it became clear. I understood the spectrum.

I became aware.

Thursday, April 3, 2008

Why I use a capital "A" for Autism (repost)

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.

Leftovers for dinner.

So... I really want to write about Autism awareness, but I haven't had a speck of time! My promotion came through this week, so I have been extremely busy trying to cover for our medical biller (who's off on medical this month, while trying to learn the job as I go. Let's just say there are times this week that I've wondered if what I've gotten myself into is worth it! ;)

Until I get a minute to put my thoughts into words, I'll repost some entries I feel would be appropriate, and deserve to be brought back from the bowels of my archives.

Enjoy (again)!