Toofless.

Yesterday, Jaysen lost his first tooth!

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

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

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

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

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

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

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

In the end, he was happy.

Doomsday

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

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

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

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

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

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

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

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

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

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

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

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

We've been haunted!

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

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

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

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

Yet another doctor.

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

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

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

"No. Just his jaw."

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

"No."

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

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

"No tongue?"

"No tongue."

"Hmmmmm....."

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

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

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

Has anyone else had any experiences with a Movement Specialist?

Best birthday ever.

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

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

But that's not all!

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

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

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

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

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


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

Bring on the birthday.

HAPPY BIRTHDAY, SWEETHEART!!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I am Mom.

I am ready.

C'mon birthday...bring it on.

Out of my mind

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

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

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

"Jaysen, do you want some water?"

"No."

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

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

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

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

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

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

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

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

Birthday time again

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you, I will have a Happy Birthday.

A tale of two teachers

I am in an interesting predicament.

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

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

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

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

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

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

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

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

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

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

Insight and advice is greatly appreciated!

Why I use a capital "A" for Autism.

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

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

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

I like to think the same views apply to Autism.

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

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

There is more to life than just being neurotypical.

Smugglers Blues

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

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

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

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

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

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

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

"Hey Jaysen, how was the farm?"

"Good."

"What did you do?"

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

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

"Hey Jaysen, did you see this?"

Jaysen looked up, and his eyes got real big.

"You borrow the cat? From a store?"

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

"Cooper from a store?"

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

"Mommy! You can't borrow him!"

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

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

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

Meow.