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?