Thursday, May 31, 2007

Steamin' Like A Demon

Here's some history of what Jaysen has been through.

He started his Kindergarten experience last fall at Carr Elementary. Before Jaysen even started school, I asked for a parapro for the classroom. My request was denied due to the school's lack of funds. I was assured that since he had an IEP, he would be accommodated in other ways. Shortly thereafter, I began to get reports that Jaysen was non-compliant, would run out of the room, and was getting aggressive. I asked what supports they had in place for him (we were beginning to get an IEP meeting scheduled, as his preschool IEP was not "acceptable").

What do you mean 'what supports do we have in place' for him?

I mean, what supports do you have for him? What are you doing to help him succeed in the classroom?

He isn't in a special needs classroom, so he won't get any supports.

Umm...yeah. See, there's this thing called the law. It states that he is entitled to things like accommodations in a regular ed. classroom. It's called mainstreaming.

I don't think we mainstream.

Thank you, I'll schedule a meeting with the principal (and hope he's less stupid than you).

I had been getting call after call that Jaysen started to bite, throw chairs, and "attack" his teacher. All I could do was say "well, what do you expect if he's not being accommodated?" and collect my legal ammo.

When meeting day with the principal came, I discussed my concerns and hoped they would be addressed soon, as we were already into a month of school. The principal told me his stand "we will not accommodate Jaysen in a regular ed. classroom, but we would be willing to move him to the Autistic classroom."

What do you mean the "Autistic classroom"? What is that?

It's the room where all of the special needs kids go.

Oh? Like the Island of Misfit Toys? No thanks. I'd like him mainstreamed in a regular ed. room.

Well we're not going to do that.

Oh yes you are. And you're going to provide him with accommodations. You have to show that he is failing in a regular ed. room with supports before you can move him to a segregated room. I spewed the ADA, IDEA, and No Child Left Behind, until I was blue. I had facts and arguments coming out of every orifice in my body. He couldn't touch me with my battalion of information.

So the principal had two options for me:

I could have Jaysen put in the "Autistic classroom" or I could send him to a different school. this was war. For the next two months, I fought tooth and nail with this school. I consulted advocates, I brought it to the Superintendent's attention, I caused all kinds of unholy hell for this principal. In the meantime, they took away Jaysen's recess. They made him go to the Autistic class when he was "bad". He was starting to react physically by shutting down. He would lay on the floor unresponsive. They kicked him out of latch key. They called me at work to come and pick him up from school because they couldn't handle him. Companion and I had to change our schedules at work to accommodate the craziness. The last two weeks, they called me every single day to come and get him.

They tested him multiple times. The school psychologist said he was retarded. Retarded? Do people still use that word? My son may be a lot of things, but he is not "retarded". That just shows me you don't know how to test a child with a language issue. You... are a dumbass.

How did it turn out? I moved.

I moved to a city with an excellent school district. Jaysen has been making huge strides, and this school not only has supports, they support him. We are so incredibly lucky to have the team that he has now. I am worried though- the principal is retiring, and the school will be getting another one next year. I am praying that they will be as wonderful as the one now.

The move has created financial hardship on us, and I still haven't been able to sell my first house (been on the market 6 mos already), but it is so worth it. Jaysen still doesn't like to go to school- I mostly blame Carr for the wonderful foundation they laid for him about school, but hopefully as he moves along, he will develop a tolerance for it, maybe even learn to like it. It sucks that we had to uproot and move, and honestly, I could have fought it- but in my mind, valuable time was being wasted and my son was suffering for it. It was better to just get out.

As for the crappy principal? All I can say is, karma is a bitch.


Finally met up with the psychologist last night. After three failed attempts to follow through on appointments (one cancellation was ours, one his, and one time he just "forgot" about us and left us sitting in the waiting room for an hour), we finally managed to meet up.

I really like this psychologist. Since Jaysen's been on the medication, his anxiety and meltdowns have been more manageable. I mentioned to the psychologist that I would like him to teach Jaysen, or teach me, self-regulation techniques. I like the fact that Jaysen still experiences frustration (as I stated before, I want him to experience the full array of human emotions) but now we need to start showing him things he can do to self soothe, and get over that frustration hurdle.

Anything I've tried to suggest to him, or show him, has either only worked once, or hasn't worked at all. So we'll be meeting with the psychologist weekly to figure out different options for Jaysen.

Jaysen has also picked up some new behaviors such as flapping his hand at the back of his head, and turning circles with his finger on his shoulders. The psychologist doesn't think it should be a concern right now, since the target behavior was Jaysen's aggression, and that has been addressed with the med. Personally, I would rather have him fluffing his hair than biting and trying to scratch people's eyeballs out, but it was a concern of the psychiatrist, so I brought it up.

He also wants to work on Jaysen's "mental blocks" where he still resorts to scripting. His latest scripting is directly from The Price is Right. It's actually very entertaining, since he plays out a very animated Bob Barker. I don't know what will happen when the last show airs. We may have to have a retirement party for Bob.

All in all, I am confident at this time that Jaysen is in good hands with the interdisciplinary team he has at this time.

The Sorry Champion

Jaysen is addicted to the game Sorry. It's actually really cool. He and Companion went to the store to pick up something, and amongst the squirt guns and other various colorful mom-I-really-really-need-this toys, he spotted the Sorry board game. Companion purchased it.

For the past couple of nights, Jaysen's asked if we would like to play Sorry with him. Sure! Last night, it was a great game. In the beginning, we played with adapted rules to keep Jaysen's frustration at bay. Last night, it turned into a no holds barred game. And he liked it. Whenever he was "Sorried" and sent back to Start, he was cool with it. He didn't get angry, didn't throw pieces all over the floor, and didn't end the game prematurely.

And the best part? He won. Fair and square, he was the Sorry Champion. He also sat there, and made me and Companion duke it out for second place. When Companion was declared the "second winner", Jaysen instructed me to finish the game myself. Once I finally got my last measly piece Home, he cheered and told me I did a good job.

Now if I could just get him to do his homework...
Love that kid.

Tuesday, May 29, 2007


I don't know why, but I have this sickening feeling in my stomach.

I am all for culture diversity and such, but I just feel this is not right. I'm not saying it's flat-out wrong, but it's just not right. Why am I spending thousands of dollars on Speech therapy, to learn that my son is a part of a culture, with it's own language (possibly more on that topic, later)?

Why would I confuse him by teaching him autlang, which is supposedly the upcoming language of his culture, when he has difficulty with the command of the English language?

Communication is a key element in human connection. There are all forms of communication. Communication is supposed to connect people. Not segregate them. Just my opinion- I don't like it.

In case the link didn't work, this is copied and pasted from the site. And it goes on and on... Check it out- I'm curious to hear other's opinions-

autlang is the autism language that is being created by people on the spectrum in order to ease communication, to continue establishing our autistic culture, and so that we collectively have a language that is very simple, quick to type and text, and east to use for autistics who use facilitated communication. autlang uses no capital letters, has no word for 'the' or 'a', has very simple rules, is logical, and should be easy to learn for children and adults with autism.

All (people)=fej
We welcome you=fe zaru ra
I learned Autlang=ji tud autlang
I speak Autlang=ji la autlang

Sit = em
Thanks = ve
Future Tense Add An 'l' to the end of the Verb
Past Tense Add an 'D' to the end of the verb
-ing tense Add an 'n' to the end of the verb
Negative tense Add an 'E' befor the Verb

To make your sentence into a question add 'Ki' at the end. Other wise the sentence would become a statement.
What = et
Where = ar
Who = ot
Why = ix
When = ep
How = op
Qa La Autlang. = she speaks Autlang.
Qa La Autlang ki. = She speaks Autlang?
plurals Add a 'Z' to the end of the word.
I sang/I have sung = ji sad
We thank you = fe ve ra
We thanked you = fe ved ra
I am not sitting = ji emen
You are not singing = ra esan
You are singing = ra san
You sing = ra sa
I am sitting and singing = ji men en san
I like dogs = ji re ikz
I like cats = ji re akz

Like = re
Do = zo
Learn = tu
Eat = be
Drink = de
Wash = mu
Play = bi
Type = fa
Write = do
Sleep = we
Cook = ke
Clean = ga
Drive = to
Talk = da
Paint = wo
Speak = la
Sing = sa
Sit = me
Stand = mu
Ask = qe
Go = wa
Stay = yu
Do you speak autlang? = ra la autlang ki

Red = ve
Blue = do
Purple = vedo
Blue-purple = dovedo
Yellow = ku
Green = kudo
Orange = kuve
White = vo
Black = ny
Grey = vony
Light blue = vodo
Dark blue = nydo

Numbers = nonz
0: qo
1: ye
2: co
3: za
4: po
5: gu
6: ba
7: ke
8: fa
9: na
10: qox
11: yex
12: cox
13: zax
14: pox
15: gux
25: guc
35: guz
45: gut
55: gug
65: gub
75: guk
85: guf
95: gun
100: wax
101: wax-ye
102: wax-co
112: wax-cox
113: wax-zax
200: cowax
300: zawax
1000: waxy
1001: waxy-ye

Meet the fam.

Just so people have an idea about who we are, I figured I should at least post a little introduction. Funny I didn't think of this first...

Anyway, hi. I'm mom. I work full time (wishing I didn't), and am raising two beautiful sons- Jaysen and Rylan. Jaysen is 5 years old, Rylan is 5 months. The love between these two brothers is an awesome sight. I've never been much for labels, but Jaysen is considered high-functioning Autistic, PDD-NOS. Rylan is...well...5 months. :)

At 25, I got married. After a few years of doing the "wifey" thing, I wanted a child. My husband informed me that he already had two kids (from his first marriage), and that was enough for him. *blink*blink* Excuse me? What did you just say? Oh okay. You don't want any more kids, so I'm telling you now that I'm going off the pill, and it's all your responsibility. Needless to say, I got pregnant with Jaysen. I win!

To make a long story short, we ended up divorcing. It was the most mutual split in the history of "irreconcilable differences", and we are still cool today.

Although I am a single mom, I am not doing this alone. I have a wonderful support system. My family is very involved, the school district has been amazing, and then there's my...hmmm...what do I call him? Despite the humor I find in it, he doesn't like the term "baby daddy" because of it's ghettofabulous connotations, and I'm not fond of the term "boyfriend" because it seems so I'll call him my... companion. Don't get me wrong, I love Companion- he's awesome.

Companion and I have been together for over 4 years now. We worked together, so I've known him for 8 years. when Companion and I hooked up, Ex asked what took so long, since he always thought we would've been so great together.

Anyway, Companion has been great. He has been with us since Jaysen was two. He's pretty much the only consistent father figure Jaysen has. Jaysen adores him. Companion knew I wanted more kids, he did not. Said he never thought of himself as being a Dad. After much discussion, we decided not to have more. Sure I was bummed, but I started to see the light. I could focus on Jaysen, and hopefully provide him with the things that he would need, and maybe even indulge in a 'want' here or there. Yes, I could definitely see the light at the end of the tunnel.

I scheduled my surgery date for a tubal ligation. 2 weeks before my surgery, I found out I was pregnant. Hello! How the heck did that happen? I was taking my pill! Regardless of our previous decision, I was ecstatic. Companion was freaking out because of finances, his age, blah blah... But let me tell you- he loves that baby more than life. He is an amazing Daddy. Not just to Rylan, but to Jaysen as well. Yes, Jaysen tries his nerves. Yes, he doesn't always "get it" when it comes to ASD stuff. But his heart is in the right spot, and it's brimming with love for these kids. That is where I'm luckier than most.

So that's the fam. Oh yeah, we have a cat and 3 fish. Well, 2 was sent to a watery grave last night. As Jaysen would say..."down the hole"!

My love-hate relationship with Julie Aigner-Clark.

Jaysen's obsession is video tapes. More specifically, Baby Einstein video tapes. Ever since he was able to hold something in his chubby little hands, videos were his object of choice. He goes everywhere with them, sleeps with them, and lately has even made voices for them so they can interact with each other like action figures. Occasionally he'll settle for a DVD, but true Nirvana is a VCR tape.

Sometimes Jaysen will overlap into an affinity for the So Smart tapes, or Disney's Fantasia, but the underlying baseline is always Baby Einstein. He doesn't really watch them anymore, it's just the having them.

He has multiples of each one, but each one is special. There is "Black Baby Mozart" which has a white label and black writing. "White Baby Mozart" has a black label with white writing. Then the ever special "Blue Baby Van Gogh" with the white label and blue get the picture.

Jasen will also hide at things he really likes (yes, hide at, not from). I've thought this is a reaction from over stimulation- like he just can't handle the excitement, but it's not quite like that. Yes, he does get over stimulated with excitement, but when that happens, he sort of shuts down. The hiding, I've noticed, is more of a play thing. I can't quite figure it out though. He'll act scared of something, and want you to chase him around with the tape, trying to tag him with it. Or he'll want to see the same picture in a Baby Einstein book repeatedly, but then run out of the room when you show it to him. You are then expected to flash the picture at him every time he runs back in the room, and then he runs back out. this could literally go on for hours.

So, Jaysen will spend hours on the computer googling Baby Einstein titles, watching video peeks, and the latest find...YouTube. He's found out that he can connect to YouTube through the Google video site, and there, he can find more Baby Einstein videos!

In the car? Baby Einstein music. I've learned to block it out, but you can tell it still grates on Companion's nerves when we listen to "Playtime Music Box- track 8 please" for the 204th time. I know that when Rylan gets a little older it will grate on his too. So then what? Take 2 cars? They in their rock-it-out cool variety of music car, and us in our Mozart-mobile? Will he ever grow out of this? Will he one day be a teenager, begging me to go see Baby Mozart in concert? I suppose it could be worse. He could want to hear Jimmy Buffet over and over- not any disrespect to any Buffet fans out there, I just couldn't imagine hearing any song with lyrics that many times.

He hums Baby Einstein music tracks throughout the day- especially when he's concentrating on something. He will tell you what song is off of which video. And he's usually right. It's an amazing skill actually.

Maybe Julie Clark will offer him a college scolarship.

Monday, May 28, 2007

The case of the mysterious thumb-foot.

Jaysen has a hangnail on his big toe. He won't let me try to "get" it, for fear it will hurt worse, so for the last three days, he has been through a batallion of Spongebob band-aids. This morning, he was awkwardly bent over his foot.

"Jaysen, what are you doing?"

"I'm putting Spongebob on my thumb-foot."

His thumb-foot? Ah... I got it.

I guess I should've known.

Saturday, May 26, 2007

Drugs and Hugs

I always considered myself one of those parents who would never resort to medication for their child. Well...let's just say my shoe is pretty tasty.

About a month ago, we had a trip to the psychiatrist. This was after many, many, many failed attempts at behavior modification, Jaysen's frustration, aggression, and anxiety were at a monumental high. She recommended Risperdal.

Risperdal...risperdal...why did that sound familiar?

Oh yeah, some of my TBI clients were on it. Wait a minute- isn't that an anti-psychotic? Hold up there, doc. That's a major drug we're talking about here. And what do you mean he could gain 40lbs? I can't have an 80lb. 5 year old stomping through the house like Godzilla bustin' up Tokyo! What? What's that you say? Diabetes? Oh hell naw- I am not putting my child on that!

Anyway, after much contemplation, I did end up putting him on that. And do you know what I found? Jaysen is much happier. He's more calm, focused, and seems more able to deal with frustrating situations. His "imaginative play" is awesome. His creativity has opened up. And an added bonus is- his language has exploded! He's actually talking in sentences that (most of the time) make sense, he's able to piece things together in his mind a little better, and he is expressing himself more. That is huge. To hear my son in a fit of frustration say to me, "Mommy, I need to get the 'energy' out", knocked the wind out of me.

Sure, he still gets frustrated. I want him to. He's five. I think it's important that he be exposed to, and learn how to deal with all of the human emotions. But we have not had one meltdown. The best part, is that he's not zombified. That was a major concern of mine. I didn't want a little zombie-kid slobbering around looking for brains. But he's not. He's still Jaysen, and he seems a lot more at ease. Which can allow me to breathe for now. I still am gravely concerned about the weight gain and such, but we'll have to deal with that as it comes. I've been trying my best to keep him active- which will hopefully benefit me as well!

Friday, May 25, 2007

Out of the mouths of babes...

Okay, so I've kept a running list of funny things Jaysen has said throughout the years, or mispronounciations, or just general aphasic word substitution. Here's a few of the winners:

Shirp = Shirt

Waikiki = Blanket

Kia = Video tape

Goom = Moon

The Screamer = The baby monitor. "Hey mommy, the screamer fell down!"

Schnakka = Kwanzaa. I think this came from a discussion about different holidays and cultures we had one day.

Eatdafoos = April Fool's! This one took me about six months to figure out- until I heard it on a Spongebob episode...


And a bit more recently...

Leg Pit = The backside of the knee. Relative to the arm pit.

Towel Hat = What mommy wears on her head when she gets out of the shower.

Bobo stick = Pogo stick

Somewhere Over the Spectrum

Five years ago, my life entirely changed. I found out I was pregnant with my first child. I have always had the parental tug, so I was just overwhelmed with joy (my husband, eh, not so overwhelmed). I was finally going to be a Mother.

There was nothing really noteworthy about my pregnancy. Sure, I gained some weight (okay, a little more than "some"), had terrible heartburn, but I didn't get much swelling, aches and pains, or even cravings. All in all, it was pretty uneventful.

Jaysen was a beautiful baby. He was bald with big blue eyes, and had such a personality on him! He hit all of the typical milestones at the right times, if not sooner, until about age two. At his two year check-up, I mentioned that he didn't seem to be talking as much as his peers. His doctor reassured me that children develop at different paces, and not to worry.

I didn't. After all, my son was brilliant- at 8 months, he could write the letters of the alphabet. At two and a half, he was reading sight-words. His lack of speech dwelling in the back of my mind, I decided to take him to a speech therapist "just to make sure". After a few evals, the therapist noted his Hyperlexia, and said that there was probably nothing to worry about, but to bring him back in a year if he hadn't caught up to his peers.

To make a long story short, after returning to the pediatrician, a trip to the Neurologist, and a second opinion from another SLP, Jaysen had been diagnosed with Aspergers Syndrome, Expressive Language Disorder, and Receptive Language Disorder. Hmm. Now, I was worried.

I researched as much as I could, but nothing seemed to fit. I bucked diagnoses after diagnoses. I wasn't in a state of denial, I knew something was amiss- I didn't want just any diagnosis, I wanted an accurate diagnosis. Jaysen didn't have the loquacious speech equated with Asperger's. The Expressive/Receptive Language Disorder fit more appropriately, as well did the Hyperlexia, but there seemed to be more. Something was missing.

He started to see the SLP on a regular basis. She was amazing, and he loved her. However, even at Speech, everything seemed it had to be on HIS terms. Enter the OT. Jaysen was evaled by the OT, and was found to have some sensory issues. Ah...another piece to the puzzle.

By now, his behavior had become so combative (not aggressive, but non-compliant), that the SLP felt he needed to see a psychologist for a consult. Maybe he could come up with a behavior plan. Jaysen's non-compliance was rendering his Speech sessions useless, as they became more a battle-of-wills than therapy sessions.

We met with the psychologist. After testing and observations were complete, he met with me to discuss the results. Yes, Jaysen was "on the spectrum". His official diagnosis was ASD (more specifically PDD-NOS).

A part of me felt muddled, but the truth is, I was relieved. I was relieved that we finally had an accurate diagnosis. Now we had a starting point.

I had worked with a variety of disabilities since I was fourteen years old. I've worked with children and adults that had DS, MS, CP, visual impairments, Deaf, POHI, SXI, classic Autism, and more recently, TBI and SCI. I loved it. I went to school and earned a bachelor's degree in Sign Language Studies. I never in a million years thought I would be using my "job" skills in my parental role. But, I figured that with all of my experience, why not me? I was probably more equipped to deal with a "special needs" child than the average person...wasn't I? Well, yes and no. As I said, I have worked with a number of disabilities, most of them were on the more severe side. I would have a whole new challenge ahead of me parenting a child with high functioning Autism.

So, friends, this began my journey somewhere over the spectrum.