Tuesday, April 28, 2009

Overload.

Have you ever been so overloaded, that you can't think?
The kind of overload that you can't complete even the most menial of tasks?
Overloaded to the point that you leave your car with the keys in it,
running,
in your driveway,
overnight?

Um, yeah. That kind of overload.

Tuesday, April 21, 2009

What- no cotton candy?!?

Carnival Time

Barbara at TherExtras is hosting another blog carnival. Yay Barbara!

While I thoroughly enjoyed participating in the last carnival (even though there was still no cotton candy), I have been struggling with the topic presented for this one.

You see, Barbara is asking for tried and proven ideas for how you have arranged your home to enhance your child’s development.

Did you catch that? Tried and Proven.
I’ve tried lots of things, but it’s a matter of perspective on whether they’re proven.
Proven to what?

Drive me to beg for anti-anxiety meds?
Become a twisted learning experience for me?
Be a pain in the ass?
Work?
Surely she couldn’t mean proven to work… could she?
Oh the nerve of her.

I wonder if I can weasel my way outta this one. Our secret!
Hmm...

Dear Barbara,
I regretfully must decline from participating in your blog carnival- you see, my hair was recently eaten straight off my head by a hungry alien-wombat. Okay, the truth is... I really haven’t done much in the way of arranging my home physically, to enhance Jaysen’s development.

~When he was younger, and his hyperlexia was in full force, I would write notes and label things to help him understand what was expected of him.
~When he was around 4-5 years old, I had to put deadbolt locks on his bedroom door because he would have such violent meltdowns that he had broken off two conventional locks, and cracked his door.
~I had an alarm system installed with a door chime because he was a runner.

Other than those few examples, I have done little in how I had actually arranged my home. I did, however, change quite a bit, the education, actions, and approach, in my home.

To strengthen Jaysen’s receptive language, I had to talk funny.
I said sentences with only the pertinent words at first, in chunks, then gradually added the seemingly insignificant prepositions at a later. I used echolalia to my advantage. I had to communicate by scripting if I really wanted to communicate, then move to mitigated scripting, and strive for independent communication.

To strengthen his expressive language, I had to do some seemingly bizarre things.
If Jaysen asked for juice, I had to bring him the juice pitcher with no cup. The cup was no longer included- he had to ask for it. When he asked for “cup”, I had to bring him a shoe. He would look at me like I just lost my shit, but I had to keep a straight face and present him with this shoe. He had to re-ask for a cup. I would prompt him in a singsong-y voice “I WANT a cup!” To which he would echolalate (made up word- shut up), and I would finally present him with a cup. That’s a lot of damn work for some juice. This went on all day for various requests.

For sensory integration, I had to provide Jaren with heavy work activities.
This meant my child was allowed to jump on the furniture, take the cushions off of the couches (this still drives Companion nuts), eat an unlimited supply of Tootsie Rolls and fruit snacks, and for other sensory stimulation, play with “messy” things like sand and shaving cream.

I had to be aware that even a minute drop of water on his clothes would cause major sensory dysfunction, and be prepared to deal with the situation. He is a sensory seeker in some aspects, and a sensory avoider in others. I literally had to use brute force to accomplish such invasive tasks such as tooth brushing and taking medicine.

Discipline- Jaysen was almost always given the benefit of the doubt. This was not because I was lax, but I had found that most of the things he did were for a reason. Whether he was not able to communicate, someone misunderstood his intention, or whatever the case- the fault usually didn’t lie with Jaysen directly. Sure he had his moments when he was less-than-cherubic, but most of the incidents could have been avoided or de-escalated with a little introspect and awareness.

Most of all, I learned (and encourage others) to listen to my son with my heart.
What is it that he is wanting me to understand? What is it that he needs?
There's a lot more to a person than what we usually take at face value.
If you listen with only your ears, see with only your eyes, and touch with only your fingertips- you just may be missing out on some of the most beautiful and important things in life.


So Barbara, I do hope you understand that I am unable to participate in your blog carnival this time around. I just don't have anything to wear.

Sincerely,
Mommy~Dearest


Monday, April 20, 2009

Sunday, April 19, 2009

I heart suppositories!

Jaysen came home from school on Friday- spiking another mystery fever. It's strange because he exhibits no other symptoms, other than a fever of 103.
We've gone through the horrors of having a sensory defensive child, who cannot tolerate oral medication. Like a trooper, he gave it valiant effort after valiant effort... and threw up every time. Poor guy.
With all the stories of kids dying from seemingly routine illnesses- my freak-o-meter was starting to kick into action.
I decided Jaysen no longer had a choice. The Fever was coming down whether it liked it or not. I went to the drugstore and sought the pharmacist. She remembered me (as the mom whose kid can't take oral meds) and pointed me to the acetaminophen suppositories.
As much as I did not want to do this to my child, I felt it was the only thing left to try. I summoned my inner Mara for courage.
I took Jaysen's temperature- 102.3.
He whimpered and cried that he had to take medicine.
I told him we were going to try "butt medicine".
He screamed.
I explained that we would try it once, and he reluctantly agreed to it.
Swoop!
Right after it was in, he said "Hey, that wasn't so bad! It didn't hurt! And I didn't throw up!"
"Aww. I'm so glad, sweetie."
"I love butt-medicine! It's way better than mouth-medicine!"
Um... okay...
Later that night, he wanted me to take his temperature.
100.8
Jaysen said, "Okay! Time for butt-medicine!"
Sweet.
I am so relieved that I have an avenue now. I don't have to worry as much about high fevers lasting for days, rushing him to the hospital for a shot, or trying to gauge if he actually absorbed any of the medicine before it came back up. That is such an awesome feeling.
Now if I can only find vegetable suppositories...
.

Wednesday, April 15, 2009

Number 9, no MSG.

*DISCLAIMER*
If you are my father, stop reading here. Really.
Click the little red " X " in the upper corner, and go look up nekkid boobies or something else. Thank you and I love you!

Now that he's gone... you are gone, right Dad?
Okay. I've been thinking of getting another tattoo.
My problem is, I can't seem to find a kanji symbol for Autism.

Understand that you cannot just go online and trust whatever picture pops up. The best way to get an accurate character is from your favorite Chinese restaurant. My encounters have not gone too well.

Me: Hi, I'll have the #9 with hot mustard. I also have a question for you.
Chinese Restaurant Lady (CRL): Okay!
Me: Is there a Chinese symbol for "Autism"?
CRL: Symbol? What you mean?
Me: Y'know, um... character. A Chinese character. For Autism.
CRL: Carater? I don know what you mean?
Me: Chinese character. A Symbol. Writing? Kanji?
CRL: Ah, writing for...
Me: My son. He has a disability called Autism. It's where... (CRL eyes become vacant... second lady comes out of the back room. I asked her last week)
CRL2: Can I help?
Me: No thank you, I'm asking about the character for Autism.
CRL2: No, no Autizz. #9 ready. See you nex week!

So, I haven't been able to get very far.

I did, however, learn an interesting tidbit in my searching.
Although in China Autism is known as "Lonely Syndrome", if you do a Google image search for Chinese + Autism, you will find a lot of images for the characters "love" and "courage". There was even one for "family".
I thought that was cool.

If anyone is able to find a Chinese or Japanese character for Autism, I would be hugely appreciative. Hugely. Like I would give you my last stick of gum kind of grateful.
If I use the character you send, I will give you a big fat prize once I get my tattoo.

My only stipulation is you have to be able to authenticate/verify that it is indeed a translation of Autism. I do NOT need a tattoo that looks cool, but actually says "My peanuts are spoiled", "Looks good in tubetop" or even worse, "I heart Jenny McCarthy".

*shiver*

Thank you, and Dad? You've only been out for a couple of minutes.
Drink some water and you'll feel better.


.

Monday, April 13, 2009

Hairdresser on fire.

One of the things Jaysen has had to overcome (along with doctors and dentists) has been haircuts. To this day, he does not like the clippers- couple the sound they make with the scraping feeling, and the fact he's been cut with them four times by various hairdressers... he just doesn't like the whole experience. Understood.

I tried to cut his hair at home once or twice, and vowed never to attempt it again. I have no talent for my own hair, let alone someone else's, so imagine my surprise when last night, Jaysen announced he wanted a haircut.

Against my better judgement, I sat him down on the toilet in the bathroom and started to buzz the back of his hair with the clippers and #7 attachment. A #7 is still fairly long, so I felt semi-comfortable, and I was starting at the back in case he chickened out.

He did not chicken out.
In fact, he told me "shave me down and make me round!" Thank you Spongebob.
After I shaved the back and sides (I kept the top moppy), he looked in the mirror and told me "Not like this! Short!" I sighed and proceeded to take the top off with the #7 too.

He again looked in the mirror.
"Noooo! Take it off!" So I reluctantly put on a #3 attachment and re-cut his whole head with the #3.
A #3 is pretty flippin' short, and way outside my comfort zone.

He looked in the mirror, smiling.

Jaysen: No, Mommy! All of it!
Me: You want it shorter...than that?!?
Jaysen: Yes. Take it off!
Me: Jaysen, that's pretty short. You're almost bald.
Jaysen: Bald! (Cheesy grin)
Me: You want to be bald?
Jaysen: Yes!
Me: Like bald bald? Like no hair? Like... skin-bald?
Jaysen: Yes! Make me skin-bald!
Me: (bythepowersofkojakwhatthehellisgoingon?) Jaysen, I'm not going to make you skin-bald.
Jaysen: Yes! Please Mommy? I want to be skin-bald!
Me: (holyfuckingshitonabowlingball) I don't think so Jaysen. Why don't you keep it like this for now, and we'll see if you want to be bald tomorrow.
Jaysen: Okay... (totally bummed)

So, my sensory defensive child set aside his fear of clippers because of...a script. That in itself was sort of cool, but he had such beautiful thick hair! Now he looks like a kid in boot camp!


Warning: Scripting can be hazardous to your hair.
What has your child done for the sake of scripting?

Wednesday, April 8, 2009

Grilled cheese - Momzilla style

Step 1:
Obtain 2 pieces of "acceptable" bread.

Step 2:
Butter bread on outsides, and place butter-side down on a paper plate.

Step 3:
While you are getting the "acceptable" cheese out of the fridge, hone your ninja skills and sneak the jar of mixed vegetables baby food out of the fridge at the same time. Hide jar behind bananas on counter.

Step 4:
Open the cheese wrapper - note this is the only time where if the cheese does not come out as a perfect square, it won't matter. As long as child does not witness any cheese mistakes.

Step 5:
At this point, start singing loudly- as this will usually deter child from entering kitchen.

Step 6:
Agility counts. Use dull knife to spread baby food onto bread. Wait a few seconds as the orange glop begins to soak in. Be careful not to overspread onto the crust of the bread, as this will surely send off a red flag. Likewise, do not get overzealous about the baby food. If you use too much, you may lose grilled cheese forever.

Step 7:
Assemble sandwich onto heated pan. Butter sides on the outside, baby food sides on the inside, and cheese in the middle. You may stop singing now.

Step 8:
While sandwich is sufficiently heating, throw out paper plate before child sees it and goes into convulsions.

Step 9:
Sandwich done, remove it from pan and place on pristine plate. Let it cool just a bit so the cheese does not drip out and stick to the plate. Cut the sandwich in a diagonal.

Step 10:
Inspect and admire how nicely the melted cheese masks the baby food.

Step 11:
Present to child and walk away. Do not watch as he looks at it, sniffs it, takes just a nibble, and finally determines it is acceptable to eat.


And that... is how we do in my house.
Wanna come over for grilled cheese???
It's yummy...

Thursday, April 2, 2009

'Twas the night before IEP...

...and all through the house...

Usually, the night before Jaysen's IEP, I am a wreck.
I can be found nose buried in books, manuals, policies, and laws.
I have papers, notes, and files strewn about.
I am perfection my "angle", slamming coffee, polishing my battle armor.
Do not even think of talking to me.

At IEP's, I am on guard.
I take nothing at face value because I'm trying to find "the loopholes".
I don't trust anyone has my son's best interest at heart but me.
I know he's not entitled to "the best" but that's what I'm after.
I come armed with notes, e-mails, and legal snippets.
I bring someone to act as note taker and witness.
I tape record everything.
I am relentless.

Last night?

I watched TV.

TV! I felt both guilty and relieved. Guilty, because shouldn't I be doing... something? And relieved because I knew all of my questions had been previously addressed, and honestly, I had no other concerns. It did feel strange that I felt comfortable enough to actually go into this meeting (dare I say it?) unprepared.

Well, if the other shoe was going to drop, it would drop-kick right into my own ass, and I couldn't blame anyone but my own dumb self. But there really wasn't anything to prepare!
Was there? No. Yes? No.

-today-

The meeting was amazing.
I was in and out in one hour.
They had sent me the proposed IEP a week earlier, so I had conducted a lot of my questions through e-mails, and everything was squared away before the actual meeting.
Updates were made, donuts were eaten, plans were in place... all was good.
We probably could have finished sooner, but the Team kept telling stories about Jaysen's interactions, how well he is coming along, the progress he's making... wow.
It was so nice to sit in a room with a Team that actually had positive things to say about my son!
Everyone (and I mean everyone) is on the same page.

I was absolutely stunned.

It really goes to show that the right environment is crucial.
Last year I had horror story upon horror story, and his IEP's were weeks long with little resolution. A child's best interest was simply not to be put above anything.
This year- I have affirmation that switching schools was The Best Decision I could have made.

Some of the things I was surprised about:
ESY - last year I had to fight for it, and only got it because I screamed that they owed him compensatory education from lack of education during the year. This year, his Sp.Ed teacher wants to be his ESY teacher to keep the continuity.

Parapro - last year I was told he would get the "bottom of the barrel" para because of the Union. Next year, he'll not only have a qualified para, but he'll have the same para he has this year (who is awesome with him).

Transition plan - last year, the transition plan was left up to me to do. Starting next month, Jaysen will meet his 3rd grade teacher, visit her classroom weekly, and get to know her teaching style before school even starts.

Testing - last year he wasn't even considered for any testing of any kind. He just "couldn't do it", he "isn't smart enough", and other craptabulous crappenings. Next year is the MEAP. His teacher wants him to take it not only because he is capable (with accommodations), but she thinks it's important for him to have the practice of taking standardized tests.
Just like the other kids. Yay for her.

And the stories.
Everyone in the room had a story they wanted to tell everyone about how he did something that made them laugh, how he overcame a particular struggle, or how he connected with a peer. I wanted to cry- because it just warmed my heart that much.

The most shocking part of the whole meeting-
My note taking paper?
Was totally blank.




.

Wednesday, April 1, 2009

Remedy or not.

I'm totally into holistic remedies, so I thought I'd give this one a try and ohmigosh- you need to try this home remedy for Autism.

Last night, after Jaysen's bath, I rubbed a banana on the bottom of his feet.
After the banana, I coated his feet in rice krispies (providing the ultimate sensory experience). Cotton socks went over the banana-krispie feet. Two marshmallows went in his armpits, and I put an apple under his pillow with an ancient incantation inscribed into it. I kissed him goodnight, and he went to sleep.

When Jaysen woke up... his Autism was gone.
Gone, I tell ya!
It even left a note!

April Fools-

Well at least he had a midnight snack at the ready.
Hahahahaaaaaa....