Puzzle Pieces and Broken Shells

In the pink

2011-03-29T22:41:00.000-07:00

Hi, it's me. 2010 was my last post? How did I ever let it go this long? I was actually sad to see that many of my blogfriends have also had a 2010 date on their last posts.....So....thought I'd switch up my layout a bit for some oomph!

Hello, 2011!

NBear is still NBear: loved, loved, and loved. :) I sometimes forget that she is now almost 10 - or perhaps, maybe I just prefer to not admit that to myself. So hard to see them grow. You blink and then it's all vaporized into something called "yesterday".

Biomeds? Yeah, they're still there - a little here, a little there when we can afford the supplements, but we have ceased being full-on DAN parents. Officially, that is. Geez, I don't even remember the last time we saw or spoke to Dr. Mielke. *shrug* Despite that however, we are happy. We're happy knowing that we at least feel that we have enough information to go forward on our own with our supplement purchases, and diet restrictions (those AFP tablets are the BOMB!) for our NBear. We're happy seeing her come into her own, whether or NOT she is helped by the supplements we provide (did I mention we also still love Enhansa?). But most of all...

I am happy. I am happy that I now realize and accept - though this may not have been in my thoughts when I first started the blog - that NBear will probably never be the "normal" I had once envisioned for her when we started this journey. I am happy that I have grown to be a little more patient with understanding her, and that everyday seems to bring me closer to being able to breathe through the rough times (highly important for sanity reasons!). I am happy that I am supported by many loved ones - friends, family, and strangers alike.

But in the end, my happiness comes in the form of my three Bears, led by my beautiful first-born Toy Story-obsessed (doubt she'll EVER get over that movie mania), funny, loud, loving,....and yes, autistic...NBear.

To happiness,*clink*, and the many beautiful shapes it is able to take.

...and hello, 2011. :)

Team WHAT?

2010-08-23T17:07:00.001-07:00

Boy, if there's anything that can bring a blogger back to life, it's realizing that her daughter (the infamous NBear) had - and I do not know HOW - published her own posts on mommy's blog!

If you checked in earlier and found 5 or 6 posts about Nick Jr.'s TEAM UMIZUMI (?), I hope you were sane enough to know that they were not mine. *lol* For humor's sake however, I did opt to keep one of the postings on board...I think of it as a little keepsake.

How is everyone?

Team Umizoomi! Episodes & Clips | Team Umizoomi! | Nick Jr.

2010-08-20T19:22:00.001-07:00

Team Umizoomi! Episodes & Clips Team Umizoomi! Nick Jr.

Auld Lang Syne

2009-12-30T14:58:00.001-08:00

(Did I even spell that right?) LOL!

Hello everyone :) NBear is fine, no worries. Mommy, however, is beyond exhausted and buzy (busy + lazy) - as evidenced by the lack of updates on my wonderful blog.

How I have missed blogging about my wonderful adventures with the NBear (aka "Silly Goose"). But alas, the sounds of just-woke-up-from-my-nap-and-I-am-grouchy-and-crying squeals from my little SBear are my cue to stop here.

...for now.

Happy New Year, everyone!

The Great Eight

2009-06-29T23:42:00.000-07:00

Yes, I'm still here! Been awful at posting lately (my fault entirely!), but today was a special day: NBear has turned EIGHT :)

EIGHT! Wow - she's almost......TEN. Really, right?

Our to-do list went like this:

1) Wish NBear a Happy Birthday and give her a morning birthday hug.....check!

2) Go to her school and tell her teacher that today was her birthday (teacher gave her a HUGE toy mic, which she loved)..hang out for a bit......check!

3) Make the traditional trek to Chuck E. Cheese's so she could go to her favorite sllliiiiiiddddeee...check!

4) Allow her to choose a toy from favorite-store-in-the-world, Target......check! (thanks for the Bratz cowgirl doll, Auntie Cat:)

5) Smile and thank God for another year of happiness, and the daily meaningful lessons she continues to teach us............double-check!

Happy birthday my big girl, my love, my NBear. Muuuuuuuuah *xoxoxoxox*

Enhansa - wow!

2009-05-01T18:33:00.001-07:00

Have you guys seen this?
How long have I been under a rock?
I happened to be perusing the ourkidsasd.com website (finally) - my ultimate goal being to purchase NBear's precious AFP tablets and Trace Minerals (teeth-grinding is at an all-time high, and we really saw results when she was taking those), when...

THIS caught my eye.

Faster than Paris Hilton could produce another pout, I told the Huz via email (and SHOUTmail...and yup, it's what you think!) about the link.

I really, really, really, want to try it out.

Has anyone else?

She came home from school....

2009-04-13T21:33:00.000-07:00

...and said her head hurt. Of course the first thing the Huz and I do was to ask her HOW and WHERE she got hurt (she's been really, really good about telling us those details - with enough patience and prompting), so it was a bit confusing when she simply said, "My head hurts, I'm sick - I need my doctor." Note: she's been saying the doctor thing for a few weeks now, since the cold and coughing deal's been circulating throughout our household!

But this was different. The Huz realized it first when he said he thought she had a headache, and quickly administered a dose of children's motrin for our poor, pained, and complaining NBear. :(

My heart sank when I noticed that her headache showed all the signs of a migraine in the making - a genetic flaw she unfortunately couldn't help but inherit: she was stripping her uniform off (heat often triggers my episodes) and wanted to get into a super-thin sundress, she refused to stay in her brightly-lit room (opting instead for mommy and daddy's dimmer retreat), and - perhaps the most obvious clue to the cause of her suffering - she lay flat on her face and buried herself underneath our quilt. As all migraine sufferers know, LIGHT is the enemy when our heads are pounding. She cried for a good 10 minutes after that, and headed to the bathroom to throw up, and then was able to sleep for a bit.

The Huz was beside himself. (My poor NBear! She's just a kid. Why does she have to have so many things against her?) To which I replied: Well, she does have one thing to her advantage! (What?)...US! *smiling* I mean, you're looking at one of the MIGRAINE experts in the world, honey! I know how to make her feel better. *I mean, what do they say you do when life gives you lemons, right?*

Fortunately, her episode was short-lived. Whew! The Huz went to check on her a few hours later and she had not only emerged from her nap much happier, but greeted him with this wonderful group of sentences: "I feel better. Thanks Dad! You're the BEST!"

No, NBear....YOU are:)

Isn't he supposed to be cute and fuzzy?

2009-04-12T07:14:00.001-07:00

Dear *** Mall Easter Bunny,

Oh boy. I really don't know where to start.

I am SO VERY sorry for the cold reception you received from my three (otherwise fun-filled and friendly) daughters during their photo session with you today. The entire event took them COMPLETELY by surprise, as I'm sure you were able to tell from their rather drab garb. *I made a mental note to myself to remember your schedule by HEART next year, so as to avoid last-minute closet raids which result in photos that look more like kaleidescopes, than keepsakes.* Alas, it was all mommy's fault.

NBear's refusal to sit by your side was not meant to be an insult. She was simply wondering why you happened to be brown. You see, she always "knew" that the Easter Bunny was white with a pink nose and a puffy tail -- you were, err...well...different. You had gloves on. It was a bit freaky for her. Thank you for allowing her to stare you down for a good minute before she decided to sit as.far.away.from.you. as possible. *clearing throat*.....Moving on...

Yes, MBEar has severe mood swings. While she was waiting in line for her photo op, she was unbelieveably excited and happy! After all, this was to be her FIRST Spring picture with the infamous buck-toothed Easter hero :) I really don't know what happened in the 5 seconds it took for her to go from the front of the line, to the side of your bench - but wow. Whatever it was, really did a number on her mood. I'm sure it wasn't your fault....well, alright - alright! Don't feel bad, but she thought you'd be a little...smaller. And cuter.

Lastly, I must apologize for my littlest angel SBear. The SECOND she got a good look at you, her eyes became as wide as Mr. Bean's and (as she stared at me) she worriedly uttered the word "DOG!" In fact, I think she may have even said it twice before I mercilessly plopped her down on your coarse, carpet-like lap.

It took the photographer girl TWO shots before we called it a day. I'm so glad she had a puppet handy! It certainly helped to get their attention away from...well, you. *nervous laugh* Ultimately, we had our pic a full second before Sophie was about to do a full-on cry. *whew* Not bad, huh?

Perhaps next year, after you've had a makeover (don't they have Extreme Hare-overs somewhere?), it will be a much better experience for ALL of you. Until then, happy hoppin!

Sincerely,
Mommy Bear
p.s. My brother said you reminded him of Chewbacca.

yes, there can. :(

2009-03-29T20:39:00.000-07:00

A few months ago, I had a visit from a childhood friend whose son had also been diagnosed with autism. He's three, and has had / is currently receiving early intervention services (thanks to his diligent parents).

In the course of our catching up, she said she was still concerned because he walks off-balance, and I wasn't sure how to react to that - the reason being, it's not exactly a classic symptom our kids have.

So what do I do after she tells me that they're going to bring him back to his pediatrician for further evaluation? The...dumbest...thing...possible. I cringe just thinking about how utterly and incredibly idiotic I was to think I was reassuring her! *kicking myself*

I told her that "there could be nothing worse than getting a diagnosis of autism, so you will definitely be okay!" Well, there WAS something worse. Much worse. This.

My lesson is learned. I must remember that the world does not revolve around my kid's issues. I must remember that in this world, one cannot close oneself in a bubble of egocentricity because it prevents an empathy for parents who also suffer dealing with other conditions. In this world, one can't heal hearts by starting with the words "Well at least..." or "It can't be any worse than..." because a parent whose child is not considered "typical" could very well care less.

But most importantly, I must remember to pray, to love, to pray, to beg, to cry, to pray, to support, to educate others.....not just for MY issues, but for THEIRS as well, because the hard truth here is - we are all in this together. All of us.

Please accept this big hug, and this apology from the DEPTH of my heart.
I am truly sorry.
Truly.

Bowling, Birthdays, and Back-thens...

2009-03-22T19:59:00.000-07:00

We decided to make it a Sunday FUN day for the fam, so the Huz thought it was time we dusted off our bowling bags, and head for the alleys! The last time we had gone, just a few months ago, NBear did a GREAT job! Seriously, it was nice to see her (although she did cover her ears every time the ball would inch near the pins - like she was bracing herself for an explosive collision) go up there and hurl her ball onto the wooden floor. LOL! I really do think that bowling is such good practice for our A-club kids, in that it helps with depth-perception practice (you know what I mean), and focus. Not to mention turn-taking:)

Unfortunately, we didn't have a camera handy (and you can forget about us taking pics with our phones and uploading them. Sounds just as easy as building a nuclear fusion machine!). Too bad! It would have caught the funny moments she had swinging the ball a good 5-7 times before deciding she wanted one of us to help her with the "letting go" part. She actually held people up because she would take SO long to let the ball go! *frustrating but funny!* After a few practice runs, though - I had my bowler back. This time it was even better: no more ear covering, and she remained focused on the ball as it made its painfully SLOW trip down the slippery road. Yeah, Mommy! I did it! I did it! :)

We celebrated her 3rd birthday party at the same bowling alley.
A few months after these photos were taken, she was officially diagnosed with autism.

I love this picture - I had just woken her up from a long nap, and she was not amused. Despite the beautiful braids and daddy's "Look at the camera!" requests, it was very difficult to get my future photographer to see the sense in needing to do such a simple task as...looking.

...but we never gave up, never stopped treating her like a regular kid, and the Huz took her up to the magical aisle for the FIRST time that day.
He gave her the ball, and they held on together...
...and even though (at that time) she didn't respond to the thrill of the moment, didn't smile when we all cheered her on, didn't seem to understand the happiness that swirled around the celebration of another year of her life, or didn't interact with her confused peers,

...she was still able to experience rolling the ball down the alley, and got a HUGE hug from the person who would - four years later - be the same one giving her DOUBLE HIGH-FIVES for scoring a 56. :)
I was right there with him!

good--bad days

2009-03-16T22:26:00.000-07:00

Thank you, HopeFaithBelieve, for this - another story of yet another child whose life (we all hope) will one day be our child's.

Or at least, I do. :)

It's funny because just now I asked the Huz, "Honey - when NBear has her BAD days - are they GOOD--BAD days?" I laugh just seeing myself type that up, knowing how ridiculous that may look to anyone else. RIDICULOUS! It's either good or bad, right? Black or white? Hot and Cold? Yes and No? In and Out?...oh wait - too much Katy Perry does not a good blogger make! (NBear LOVES that song to death, by the way).

The Huz replies by telling me that she can at least verbalize what she wants now (I know), as opposed to being non-verbal (I know). She knows what she wants, and how to express that (I know), and for that we should be thankful (I am). *sigh* When my friends ask me how she's doing now that she's pretty much off her regular biomeds routine, I answer with a very honest, "I don't notice too much of a difference - I mean, she's still doing fine!" - and then I need to step back and look at the bigger picture: can she be doing BETTER? Did we make a mistake and pull her out too early? It is nerve-wracking indeed.

My gut tells me that we need to wait to replenish our funds first, before plunging back into another DAN! session. But, is it doing her any good?

THAT - is what kills me. :( Bummer.

March already?

2009-03-07T19:12:00.000-08:00

*My how time flies*

I'm currently enduring an NBear not-so-hot moment. *sigh*

What would you do if your child decides to strap on her hot-pink in-line skates, play roller skating rink in the kitchen (which is hardly what we would call spacious), all the while JUMPING repeatedly (though impressive, quite irksome when Mommybear is trying to suppress an impending migraine), and "crashing" herself into the lower cabinets as she zooms along?

Oh - I forgot. Add the following to this scenario: She's been doing this for the past 20 or so minutes, all the while adding her notorious TV talk and endless stream of yellswhinesscreamsyellsyipeeswhoaswhines. *I will not scream, I will not scream, I will not scream....*

My choices?
1) Give in and scream.
2) Rip the skates off her feet myself.
3) Take my anger out on the real root of this problem: The Huz - who gave her the skates in the FIRST place!

............I'm so glad writing soothes me.
...and that my laptop was here.

Sorry *pout*. Just one of those darn days - err, nights.

Ashes to ashes, dust to BUST!

2009-02-25T18:44:00.000-08:00

Aaahhh...Ash Wednesday - the beginning of the Catholic community's Lenten season. It marks a period of selfless sacrifice (*sob* Do I REALLY have to give up my coffee? How about I give up Oreo cookies instead? You haven't had an Oreo since you were in the 5th grade! That's not selfless enough!), courageous fasting (must....ignore...smell...of...juicy...burger...), and -of course - the humbling ceremonial rite in which the ashes are placed on our eager foreheads.

Or, in NBear's case - NOT SO eager.

I don't want STAMP on forehead! No Mommy! No daddy! No stamp on forehead anymore! NO!
[That was BEFORE the ashes]

I want take off! *sobbing* No STAMP on forehead! Noooooo! *sob* I want take off!
[...and, after.]

Yup. Need I also mention that the second she was face-to-face with Father Dan and he was ready to place his blackened finger on her face, she (very politely) said "No thank you, sir!" I didn't get a chance to see his reaction, though - but the sigh the Huz let out behind me (we sandwich the kids whenever we have to line up for anything. Great strategy to prevent runaways) was enough to convince me that Father was probably NOT impressed.

Hey - at least she followed directions and didn't rub it off when the Huz told her not to. PLUS, she allowed me a rare photo-op, despite the teary evidence.

Of course, the smile didn't last very long so MBear compensated. (Who else? She looked at the ebony smear like it was the Hope Diamond in tattoo form!)

Well, at least our first-time ash-ee was all smiles!

Whaaaa...???

2009-02-18T05:45:00.000-08:00

*photo - NBear with Kimo in Guam, September 2008*

She LOVES animals!

Can everyone see this?

Yup - I'm a facebook fan...atic, but I happened upon this "Cure Autism Cause" page thru (through) a cousin's invitation.

I didn't realize there was a whole community out there of people who did NOT think ASD conditions should be cured! I feel like I've discovered a lost civilization of sorts:

Two reasons why this cause is horrible.

Post #1
1. There is nothing wrong with being autistic. 2. The most talented and intellectual people on earth are on the autistic spectrum. p.s. A group for awareness and advocacy would be great. Curing it is not the answer.

Post #2
i agree

Post #3
Wow I never saw it that way!! That is so true! My brother has a child whom is autistic....

Post #4
I agree it should not be 'cured'. Recent research has discovered that those with autistic spectrum disorders actually have more highly developed brain columns and have faster firing neurons than a 'normal' brain. Similar to Savants, ASD appears to over-ride primal instincts and the brain begins to work more like a computer. Children with ASD are highly intelligent - they just need more help with being able to express their thoughts as they can apprear random, when they just need channelling.

Post #5
Not to mention that autistic people have just as much of potential to be happy as anyone else. The people complaining are the family members who consider their autistic sons/daughters or siblings a "burden." Someone with cancer or aids would be more than happy to have a cure, but would an autistic person really want to change who they are?

Post #6
no they wouldn't - if you went to China, you'd learn to communicate in Chinese, France, you learn French - how about the so called "normies" learn to communicate autistically, and learn to develop their other senses other than just flap their gums a while....how many english speaking people use the language, and don't understand what they are saying in the first place!!! LOLhave the potential to be happy - they exceed most people with their daily gratitude in the first place... my 21 yo daughter says she has no desire to change because she doesn't know how to be anything but autistic....who has the problem here???

Post #7
Okay my autistic son is gifted, very bright, yadda, yadda. However, I have friends with AS children who are severe/profound in their disabilities - and they want a CURE.There are two sides of every argument.

Post #8
My son is PDD NOS, he behaves 'normally' in most things, now, after getting him much Occupational and Speech Therapy. But when his allergies flare up, his brain doesn't work the same and his PDD NOS becomes very obvious and the typical behaviors are present. When you get a 'cure' it doesn't mean it has to go away. I want the research to provide a better understanding of what happens, so when the communication breaks don't happen. The fits and inconsolable moments are rare. Let them flourish without some of the negative aspects that are associated with it.My son is not a burden.

Post #9
Okay, if you don't want to "cure" autism-spectrum, how about reaching a level of knowledge where it's possible for autism-spectrum kids to have what we laughingly call "normal" lives, including the ability to form friendships and interact with other people on both one's own and the other person's level? And the ability to deal with changes without having a meltdown?--Phil, parent of an Asperger's Disorder suffer-er

Post #10
I am a behavioral therapist who works with ASD kids, those of you who think that a cure is a bad thing have obviously never been close to someone who is so severly imparied by this disorder that they can not communicate to you when they are feeling hungry, sad or sick.

...but, to be quite frank - I don't GET these people (the ones who are anti-cure)!

Not.At.All.

What I wouldn't do to make my princess better. :)

Thanks, RMS!

2009-02-12T15:59:00.000-08:00

Childhood friend and NBear-godparent RMS sent me this short but sweet (and significant) link:

I little more light was added to the end of MY tunnel, I tell ya....

*Hope they win! crossing fingers like crazy!*

Today

2009-02-05T21:08:00.000-08:00

*photo taken on her 7th birthday this past June, at her cousin's house (she had just learned how to appreciate goggles!)*

Today -

1) MamaBear (my alter-ego, when MommyBear is not as relaxed as she should be!) took half a day off of work to go to NBear's annual IEP.

2) MamaBear and the Huz found out that NBear has met many of the academic goals that her IEP had stated. *yeah*...although we heard the usual, "She is great at reading, BUT needs work with comprehension!" (So do my 4th graders....I thought to myself...)

3) We reiterated the need to keep her on a GFCF diet, and that she could not indulge in the same snacks her other classmates had, if they contained the dreaded ingredients. This was the part I hated because we had to bring up the whole biomeds program, since her principal and BMT supervisor were there - (You know, the Jenny McCarthy story? Oh, I see you're not familiar with it. Well, it is OUTSIDE the umbrella of the typical way people "treat" autism, and it involves believing that your child can make huge gains - which we have definitely seen - with supplements and chelation.......)

Let me just tell you, that no matter how convinced you are that you know what's best for your child, you will always feel like you're saying the wrong thing when you get nods and confused stares in return.

Oh well. :)

4) We learned that she still had her fits during mainstreaming, and would sometimes go to the bathroom and dilly-dally in the hallway to avoid having to do the work that was assigned! Needless to say, the Huz meekly added "I think she got that from me..."

5) I smiled to myself at how far she has come.

6) I thought it'd be nice to share that with you:)

....nite.

Three things:

2009-02-01T08:44:00.000-08:00

Because I'm in a Lovely Listing (otherwise known as Energetically Enumerating) mood, here goes:

1. Having had NBear on biomeds under the care of one Dr. Mielke, it's become easy for us to see when a yeast overgrowth is occurring. (3 things to remember, as per Dr. Mielke - stimmy, silly, spacey) So, it looks like we'll be following what Jenny put in her book - To remove Evan's candida, we did start him out on a prescription of Diflucan but after a few weeks, I switched him to a natural supplement that did the same thing. It is called ThreeLac, and if you Google it, you will find many places that carry it. (page 200, Louder than Words)

2. We went to my mom's apartment yesterday, and - for the first time EVER - we both noticed that NBear had NOT once rewound the Blues Clues video she was watching. (Mind you - this is her routine as soon as she enters the door: say hi to grandma, rush to the TV and VCR *yes, VCR - remember those?*, pop in the video, and rewind certain scenes numerous times until we leave.) It was a good day!

3. This post was beautiful. It features a teenage orator named Soeren Palumbo, taken during a speech he makes during (I'm assuming) a student body assembly. He doesn't talk about autism specifically, but about disabilities as a whole - and how the world (as we know) can be a cruel, unforgiving place. I won't tell you anything more, in hopes that you will watch it in its entirety. Don't let the shaky camera in the beginning turn you off to the rest of the video!

What are YOUR three things? :)

Bedtime stories :)

2009-01-31T20:55:00.001-08:00

And now, starring in their FIRST video on this blog - I present to you, the lovely MBear and NBear!

Enjoy :)

Hair today, gone tomorrow!

2009-01-26T20:01:00.001-08:00

Serves us right for thinking we could leave the girls alone downstairs for a bit!

Just a few minutes ago, I was jolted out of my seat (here, at the computer) by the sound of NBear's footsteps running up the stairs, and her squealing voice uttering these words:

Mommy --- Daddy! Is MBear! Is MBear is haircut! Zzzizzors!

I grabbed SBear in my arms, ran to the door (at the same time saying "Whaaat!??" while the Huz - who obviously heard the message - also made his way toward me. We met at the top of the stairs, both groaning the words "Oh no...oh my gawd....oooohhhhhh" and dreading having to catch sight of our daughter's new 'do.

I don't know what visual Huz had prepared for himself, but I had images of the movie "Powder" in mine. Then, the inevitable onslaught of images came: Yul Brynner in "The King and I"...Gordon from Sesame Street...Caillou....even Milla Jovovich in "The Fifth Element"....you get my point.

* The bad news --MBear had indeed chopped off a significant amount (no photos taken - I don't want to remember how angry I was at her!) of her tresses. The evidence was all over the carpet and on their play slide! No - I do NOT want to know how the heck chunks of her hair got on the slide!

* The good news -- the part she chopped off was close enough to her bangs, they simply looked like a "layered" addition to her look. (Or maybe I'm just trying to make myself feel better? The Huz certainly won't agree with the Layered-look theory because he said "See? Look at you now! You look so funny!") sigh.

*The BEST news -- *just in case you missed it in the beginning!* YES! NBear actually told us what had happened! (She's also been good about telling us when one of her siblings has an accident, but "poopoo" is much easier to explain in one word than when somebody cuts their own hair off). The other neat thing happened when I was making my way down the stairs. I guess she sensed the angst and anger building up inside Mommy Bear because she quickly turned my face towards hers and said something like:

NBear GOOD GIRL! I love you, Mommy! (I love you, too) MBear is barbershop!

...and then when I acknowledged what she had said, That's right, honey - you are a good girl! Thanks for telling us, and for not cutting your hair, she gave me a *thumbs up*! :) HAHA!

Talk about knowing how to save her behind, huh?

I leave you now with another photo from NBear's gallery. I'll call this - MBear, before the Z-mishap. Enjoy.

Movies and Dogs and Hotels oh my!

2009-01-24T09:23:00.000-08:00

Gotta love LM! thank you, thank you, thank you...

Last night was the first time I went to the movies with NBear without the Huz.

Yes, I was pretty nervous, but when LM suggested that we watch a movie with her and super-duper cutie daughter J (with MBear in tow, of course), I practically leaped at the chance to be able to say these words to myself: "Yes, NBear went to the movies with a friend! She had a great time, and - oh my gosh - it was an official kiddie outing!"

Of course, the night did not begin so well *lol*. After the Huz picked her up from her social group at school, I told her about the movie plans and hyped it up as much as I could (Come on, Nbear! Yeah! We're going to watch a movie ..NO MOVIES, MAMA! NO MOVIE ANYMORE...so you have to change your clothes, ok?) She ran upstairs excitedly, and just as I was about to claim victory, Huz says, "She just changed into her pajamas." My smile disappeared.

I don't know how I managed it (perhaps she saw MBear dressed and ready to go?) but she later agreed to put on movie-appropriate garb, and with LM and sweetie-J in our van, we headed to the theater to watch this. Woof.

*Yes, she covered her ears and closed her eyes for a few of the movie scenes -

*Yes, she made nonsensical noises and uttered some"tv talk" throughout the show -

*Yes, she echoed some of the scenes' lines when the characters would say them (Friday? Where are you?...Friday? Where are you????)

* read every...single....word (or attempted to read) shown in the movie - OUT LOUD.

BUT - YES, she also...

* made some conversation with the ticket person (Hi! How are you?)

* attempted to pay for mommy's popcorn with her movie ticket (Here you go! *holding ticket up to the confused popcorn-scooping man)

* had many "conversational" moments with LM and J

* very obviously enjoyed herself :)

Mommy Bear is happy. Very, very happy:)

Here's to your first movie night "playdate", sweetheart *big hug*!

I love love love love love you *muah*

Note: Plus, it didn't hurt that there were 3 kids in the theater screaming their lungs out. It certainly made me feel so much better. HAHAHAHA!

What if...

2009-01-22T15:59:00.000-08:00

Thanks, Ginger - for this wonderful post-to-a-post, on your blog :)

Funny how we're also learning about multiple perspectives in my classroom!

Eye-opening, indeed. I'm hoping a TON of people have read it.

*side note*
Sorry for not having an NBear original pic to post - been blogging from work (after school!) because I know I won't have time at home....I wonder why? *lol*

...and you are? (said David Spade-ishly)

2009-01-21T15:43:00.001-08:00

I am so very lucky to have great friend LM, who volunteered to watch all three (yes, you read THAT right) bears while I took the car in for its so-many-mile service. When I picked the girls up, she had quite a funny story to tell me:)

LM:
So, NBear looked at me and said "Hi! What's your name?" and I wasn't answering her right away because I was busy with something else...

Me:
Yeah? (eager to hear more) *note - I was pretty sad :( that NBear didn't remember her name! This was not the first time they had been at her house, nor was it the first time they'd met.*

LM:
Then, she looked at me and started saying... "My...name...is..."

Me:
*Laughing* Oh my gosh - you mean, like she was prompting you?

LM:
*laughing too!* Yeah - it was just so funny how she said it!

Well - good job, NBear! Not only have you shown Mommy that you can ask people for their names, you've also done a wonderful job letting me know that you can also -

tell them HOW
to answer that question. ;)

Bravo!!!

My Repeat-erminator!

2009-01-19T07:10:00.000-08:00

(photo courtesy of MBear, who was able to capture her sister's oh-so-hard-habit-to-break: nail-biting!)

NBear has recently discovered that mommy's laptop (which now has a permanent spot on our dinner table) is just as capable of getting internet access downstairs as it was upstairs. Welcome to the wireless universe, honey.

Huz and I try to keep her off the computer as much as we can, unless we're in the room with her to monitor her web-surfing know-how. Boy, does that girl know how to surf!

Her favorite site happens to be Youtube, where she entertains herself endlessly with scenes from her favorite Pixar film (Toy Story) or Elmo dvds. Yup, she can go from the desktop to Youtube by Google-ing (Huz has it on his favorites list) the words "Toy Story" or "Elmo" (or anything else for that matter. I know I said I'd be so happy if she ever learned how to spell -but....*sigh*). Needless to say, not all the videos or sites are appropriate, and when she happens upon those, I experience rare moments when I am actually happy that she doesn't ask questions!

Like when I took her to work one weekend and she put my computer's sound on full blast - I found myself listening to a very explicit version of a Woody and Buzz scene. Let's just say... words that rhymed with muckin' and fit were among those being uttered. Poor NBear. I'm sure she was wondering why mommy ran to the computer like a lunatic, furiously waving the mouse's cursor on the screen in a desperate search for the "Escape" button. *note to self: must tell IT person for district about blocking that despicable site!*

She also loves to repeat and repeat and repeat and repeat and repeat and repeat and repeat..*whew* (you get the picture) AND repeat those online videos. Am I right to call this her visual stim, or is that a characteristic across the board? If she's left alone, I'm sure she can keep at it for hours and hours. :(

I suppose this is why Huz and I would rather see her watch TV (yes, I said it!) than be on the computer OR watch a dvd - which also gets rewound like crazy. The obvious reason? She cannot control how the story/show/commercial will run its course! She may change the channel, sure, but it's still miles better than hearing "Hello Elmo" 50 times in a row. Groan.

I am so tempted to buy her her OWN digital camera. That should keep her occupied. ;)

Cheese, Mommy!

2009-01-18T06:32:00.000-08:00

I wouldn't be surprised if one day, NBear won a Pulitzer prize for her amazing photographs!

She never really took an interest in mommy's digital camera before, until she figured out how to actually TAKE a picture. (not with my help, I may add) After that, I'd often discover that my camera would be missing from its usual spot, and when I'd finally find it and turn it on, there would be a ton of random photos - some you have already seen in my posts! *lol*

The days of being jealous because other kids could take their parents' pictures (my 4 year-old goddaughter "A" took a great many pics of her mommy and daddy - A and C - while we were hotel-hopping in Vegas), are gone! I mean, sure - she has to work on her angle and distance so we don't look like fleas on the Leaning Tower of Pisa, but I'll take it.

Before, Huz and I were always baffled at how difficult it was to get her to look at the camera screen, realize that it was a reflection of the scene she was looking at, and take a picture. But, it was. You thought it was tough to get her to look at the camera when she was the subject? Being on the other side of the camera proved to be an even greater challenge!

That is, until today.

Enjoy some more of her exhibits below :)

Incriminating evidence that MommyBear is a slave to the Starbucks franchise.

MBear - her favorite subject and muse. (That is, if they're not embroiled in a fighting match likened only to that you see in a UFC event!)

I'm sure she'd name this one "Pretty Doorknob".
(Notice the exquisite way she was able to capture the light's reflection on the dull brass. Breathtaking.)

Gotta love the Wonderpets!

...and these "Upside Down Show" guys. :)

The end. For now.

2009-01-17T09:10:00.001-08:00

Before I begin a post that is long overdue, I really would love to thank the readers and dear friends I have out there! It's neat how people come up to you and say "I read your blog! It's very interesting - I have a friend who has kids with autism..." (that was from little sister Val *hug*), or when people you haven't even met, make their chat status read "Gotta love the Cinderella Rain and Dancing Bananas" and your heart explodes (that was for robot number BF3L:RCPB - you know who you are!) Little comments and awareness-moments like these really do give me the confirmation that I am of help...or rather, my NBear is :) So, I do thank you all so very much! And now, we begin.....

Carolyn's holiday blog break was certainly nothing compared to this recent insane hiatus of mine (more like a hibernation, if you ask me!), but I'm so glad I'm back (and you're still here).

You are, right?...hello?......anyone out there?....

We made a very difficult decision after the new year hit: Nbear would have to stop her biomeds program, just until we could get back on our feet again. *sob* The Huz was the first to bring it up, which was a LOT ironic, being he was the force du jour in this entire scenario. Needless to say, the times are not on our side -- nor that of the entire nation's!

So, with a heavy heart, we agreed to use up the last of the B-12 shots, the glutathione ointment, and continue to give her the supplements until they too were gone. (Of course he made it VERY clear that this was just a "break", and nothing more!) So, I braced myself for an extreme regression period, or - heaven forbid - the devastation of seeing all of our hard work (and hard-earned money) go down the drain in the form of losing NBear's progress completely!

I have to admit, without the daily schedule of supplements and measuring spoons and watching the clock, and write that down to remind us that we already gave it to her this morning, and today is shot day will she stay still and so on and so forth, I immediately noticed the very first change -- but it wasn't with NBear.

My husband's stress level had taken a wonderful, almost Olympic-level dive. :) All the months of biomeds and DAN! protocols had certainly taken their toll (though we certainly don't regret any of it), and it was nice to see the "ease" seep back into his eyes. It made me - yet again - aware of how lucky other parents were, not having to go through what we in the A-club world go through. And oh! How wonderful it was to just have to take the AFP tablets with us, and be free of the arsenal NBear usually had to have: to not have to pack her meds when we anticipated staying late at a get-together (though we still have to pack some of her gfcf food) was heaven.

Did she change?
Honestly, I'd have to give the dreaded two-fold answer.

Yes: She has been Ms. Defiant these past few weeks, but has taken an interest in rollerskating, thanks to the Christmas present from daddy. I'm not sure if her frustration lies in the fact that the 2-week Christmas break didn't offer her much of a "fun" schedule (that would be mom's fault), or if she's at an age where she's just more aware of...well, not wanting to follow orders. Isn't that puberty, though? *ugh*

No: Other than the aforementioned, however, she is still my very verbal, very playful, very social NBear. Sure the language still needs work, but she has still retained what we saw her gain. I love watching her play, play, play with MBear. She does get her silly moments (and that's when I remember Dr. Mielke's warning about yeast overgrowth, and have to warn myself to calm down, and just enjoy the laughing spell for what it is) and I am warmed.

I have a feeling - despite what our nation faces in these dreary times - that the best...
is yet...
to come. :)

Happy new year!

Merry Christmas to all...

2008-12-24T22:14:00.000-08:00

...and to all,

a good night. :)

~ Here's to another wonderful holiday season, and the beginning of a prosperous new year. From our family, to yours ~

and finally, the pics!

2008-12-23T07:41:00.000-08:00

Here's our beautiful singing sensation enjoying her debut performance!

...and of course, when the music was getting a tad too loud, she only had one hand free to do this (she's getting so much better at NOT covering her ears, though - even when a loud doggie bark is heard....and even at the movies! *yeah*) I had to get this pic:)
Let me not forget to mention that Nbear's good friend "R" was the other singer (he was to the left of the drummer boy), and they both sang with all their heart.

Shall I play for you?

Pa-rum-pa-pa-pum

On my drum...

Me and my drum :)

2008-12-11T20:17:00.001-08:00

*sorry, guys - this was still in my draft folder! YIKES!*

Aaaaaahhhhh....what a wonderful program it was. We are truly blessed to have Mrs. A with NBear this year, and it was very obvious tonight that every parent (who has a child in her class) felt the same. I really don't think she realizes how much light she's put into all of our lives.

The evening started out with Mrs. D, the school principal, making her usual welcoming remarks. She was nice enough to do a special shout-out (aka preview) to my NBear's class, and how they were "such a wonderful SDC group". She also mentioned that most of the children in the class were diagnosed with autism. I had mixed feelings about her mentioning that although they may not sound the same as other children, or may act a bit differently, we must all realize that they are all children with feelings too. She also added that earlier, for one of their rehearsals, some other kids were laughing at them and one of NBear's classmates thought he was the reason for the laugh. (That's actually when she mentioned the "feelings" part) So - she continued - I know you'll all be on your best behavior and will cheer for them when they perform!

They were the third performance, and when they emerged on stage, my heart swelled with pride:) My NBear was immediately handed a mic - OH! By the way, as an important side, I must add that one of the wonderful parents in her class volunteered to provide their costumes for them. They were hand-sewn! - which she held on to, like it was second nature. There was something that made me a tad bit anxious, though...it was when she first looked out into the audience and pretty much had an "oh-my-goodness-why-are-there-so-many-people-staring-at-us?" look. I was afraid the stage fright monster had finally bitten!

When I caught her attention, though (NBear! Honey, you need to push your hair out of the way, sweetie!) she smiled a huge smile and said "Mommy!!!" Of course, I chose to ignore the fact that she had taken her hair down, which I had so carefully and lovingly tied up so it wouldn't fall in huge chunks on her face while her hat was on....*groan*

All was well in the universe after that. :)

All, that is, EXCEPT for the moments MBear would try to escape and join the singing (and drumming) sensations ON the stage! I thought it incredibly cute that she was singing along with them, anyway.

pics to follow!

she let go...

2008-12-10T22:07:00.000-08:00

I was emulating Olivia Newton John's performance in Xanadu last Saturday at Joshie's birthday party in San Ramon's The Golden Skate, and boy was it fun! I hadn't been on rollerskates (I mean, "quads" as they are now called, as opposed to the more popular "in-lines" aka rollerblades) since I was in high school, so the whole experience made me giddy all over!

And oh, my - you should have seen NBear! She put her skates on by herself (of course I helped with the laces), and was SO the eager beaver! Not only did she have a no fear approach, she was more than happy to pick herself up after each spill. *yeah* The GREATEST part was -- she let go of the hold-on-for-dear-life rink "gutter" - as I call it - and was able to balance enough to keep up with me, hand-in-hand. :) It was such a wonderful feeling! Me, her, the smooth surface helping our wheels glide effortlessly, the smiles on our friends' faces when we passed them, the relaxing sensation taking over my entire body...

...that is, until NBear's right leg found its way between MY legs, and caused me to hit the rock-hard rink straight on my tailbone. *yup, I see you wincing!* It was such a hard fall, that moments after I exited the rink and sat to catch my breath, my friends' faces looked like they were being swallowed by black ink. I know I remember saying "Why can't I see you guys? How come I can't see you?" Luckily, I didn't faint. What I did have to do was help myself to some powerful doses of Ibuprofen for the next 3 days. Ugh - I hope I didn't break it.

It was all SO worth it, though.
Why?

She let go.
She.....let......go. :)

nervous mommybear

2008-12-10T21:45:00.000-08:00

Wish us luck.

NBear's Little Drummer Boy performance is tomorrow night *egad!* at 6pm. They will also have a morning show for the entire school.

I'm sure it will be a packed house, as every parent will try to claw their way to the best spot possible to capture the PERFECT shot of their little stage bunny. I'm going to be sharpening my fingernails after I type.

Since this will be her first EVER stage performance, and I'm hoping she doesn't freak out right before they cue the music (as I've stated in previous posts), I am also wondering how other parents in my position have dealt with such anxiety.

Help.
I'll take any advice. :)
I know I can count on my friends to bring me some sense of peace.

Let them eat cake!....oh no! not CAKE!

2008-12-07T08:45:00.001-08:00

(photo by NBear Leibowitz)

...CUPcakes, that is.

There is nothing more "horrifying" than seeing video of your child munching on a Safeway-bought cupcake with the rest of her classmates, especially if she is on a gfcf diet. I mean, sure - it was somebody's birthday and NBear was an active participant in the let's-belt-out-the-happy-birthday-song part, but oh...

As soon as the Huz said "NBear BETTER not be eating one of those cupcakes - if I see her eating one of them, I am going to be so mad! Everyone in that classroom was notified of her diet and..." the camera (as if on cue) panned to a giggly NBear, Safeway cupcake in hand, licking the icing (dairy, no doubt) off the top.

I didn't think it was possible for the Huz to turn any paler when he saw that.

But, he did.

"Hey, at least Mrs. A caught it (there was visual evidence to prove it) and threw it away - you've got to commend her for that part!", I added in meekly.

Silence.

Fade to black.

Pa-rum-pa-pum-pum update!

2008-12-03T21:59:00.000-08:00

New email reads:

Hi all!

Please prepare your child's costume for the winter concert, as follows:

1. white long sleeves shirt
2. brown capri pants or black short pants may do
3. knee high white socks
4. red suspender - if he/she has any. If none, I have red cloth we can use.

As for the green hat, you don't need to worry about it. I'll provide it.

Please have it ready next week (December 8, 2008). I cannot guarantee your child will perform, it will all depend on his/her mood. As for now, we are practicing the song. Hopefully, all of them will at least come up on the stage. Thanks.

Mrs. A

Can you see the smile (of relief) on my face already? *aaaahhhhhhh*

to date

2008-12-03T20:38:00.000-08:00

Six months.

It's been (almost) six months, everyone. Since this. You remember - the firing pistol? Wow. You don't even realize how much you've said until you look back, huh?

I love how life evolves, and finds a way to become the norm. I remember the days of marking calendars with individual meds and supplements she'd taken, balancing checkbooks like lunatics, sweating over what she could eat, and constantly being on the lookout for ANY sign of improvement. It's still all there of course, (all except the calendar fiasco, thank goodness) but so deeply etched in the fabric of our lives*, that we no longer see any of it as hard. It is just....life. :)

* please don't sue me for using your motto, Mr. Cotton Industry. It worked so well for the message I wanted to send. Thanks:)

Little Drummer Girl

2008-12-02T23:14:00.000-08:00

I got an email the other day that said:

NBear may be one of my lead singers for the Christmas performance. Please make sure she practices the song. I have placed the CD copy and the lyrics in her backpack.

Mrs. A

WOW!

Looks like we'll have to fire up the camera and camcorder batteries for her first school Christmas concert! I made sure the Huz had the CD in his van so he could play it while driving NBear to school everyday. After all, she loooooves to belt out tunes! (Did you play it? Yes, I played it. Did she sing? No, she just listened to the song...)

That's it. I'm kicking into stage-mom mode. Bridezilla's got nuttin' on me! I'm just hoping and praying my oh-so-nervous-for-NBear self won't be too disappointed if it doesn't go as planned. Even if it doesn't (must not be negative, must not be negative), I will be there to hug and hold my Little Drummer Girl.

Please please please give me the strength and patience to put together a costume that looks like this. (Mrs. A's request. Not asking.) The Huz just said - Are you SURE that's what she wants? Isn't the drummer boy supposed to be a Jew?

Perhaps I misread something - or missed the word "Yodel" in the instructions somewhere?

help.

baby formula news

2008-11-28T20:51:00.000-08:00

For those of you who give (or know people who give) your children baby formula - this is a must-read.

We were once fans of the Enfamil product mentioned in the article, and used it for all three of the girls. That is, until we decided to go organic and switched SBear to this.

Thank goodness. I hate it when they say "trace amounts" of a BAD thing were in the product! Trace amounts 3 or 4 times a day no longer equates to trace.

Idiots.

Just be careful, okay?

dancing bananas, and Cinderella rain

2008-11-28T20:06:00.000-08:00

Sorry - no NBear photo for today's post (I'm downstairs on the laptop, and her fabulous files are in the office upstairs :( --- in case you were missing her interesting "eye" for beauty!

So - dancing bananas, huh? We came home from the annual family Turkey Feast last night, got into our PJs, and just as we settled into bed (at least tried to) NBear went up to the Huz and said she was hungry.

Being that he was ready to pass out (what's that chemical in turkey meat again?), his quick fix was to tell her to go downstairs and grab a banana for herself. This is the part when MBear also decides she is hungry, and opts for the same "treat". I already mentioned we were ready to PASS OUT, right?

NBear comes back into our room, two "naked" bananas in her hand - she has this odd thing with bananas and their peels, and refuses to eat one unless the ENTIRE peel is off! (Utterly frustrating because Mommy doesn't like dealing with sticky-hands) Then, just as she's ready to hand one over to NBear, she takes one more look at them, rocks her hand back and forth and says "Dancing Bananas!" *enter the sound of roaring adult laughter, and the need to sleep is forgotten for a few more minutes:) *

Now, for the Cinderella rain deal - does anyone know what the HECK that is? My poor NBear was sobbing like crazy today at Safeway, and kept telling me that she wanted "Cinderella rain, Cinderella rain, please - it IS Cinderella rain, mommy!!!" I was extremely baffled. I tried to retrace our steps (only in my head, lest we ran into this infamous Cinderella rain, and it cost more than I'd like!) because I knew it was something in the store that had caught her eye.

Alas, I left the store sans magical rain, with a broken-hearted angel clinging to the side of my grocery cart. (The fact that I was able to complete my shopping list was a miracle in itself!) I must admit, though - she didn't fall apart like I feared she would. Sure, she cried...and cried...and cried, but I realized that she had learned how to do one thing: calm herself down on her own. It may have been a one-time incident, (I'm praying it's not) but it was a wonderful moment. When we shop, she's usually not upset to the point of crying, so I definitely got a bit nervous when she broke down!

*breathing my well-awaited sign of relief* :)

Happy Friday everyone!

Thoughts on Thanks

2008-11-27T11:44:00.000-08:00

My name is NBear, and five years ago, my parents got the bad news that I had autism. That's kind of funny, considering I don't feel any different from anyone else, and I most certainly don't look any different - in fact, I feel like a regular, energetic (Mommy and Daddy call it something like "hyper"?) seven year-old!

I've been noticing all the thanks people have been talking about today, so I thought I'd make a list of my own!

I, NBear, am wholeheartedly thankful for:

*

my little sisters MBear and SBear - but mostly MBear (at least at this age, because SBear isn't as much fun when I want to play run-around-and-chase-me. She does this funny crawling thing that takes waaaayyyy too long!)...mostly MBear, because she takes the time to have conversations with me, and doesn't seem to mind when they get repetitive.

*the DVD player and remote! I know this drives everyone mad, but I absolutely LOVE watching scenes over and over again - how can they not see the beauty in that?

*the people who've created YUMMY gluten-free, dairy-free, and egg-free snacks for my palate's pleasure -- there are too many to mention!

*my father, who has searched HIGH and LOW for those snacks, and my mother who blogs for me :)

*my 2nd grade teacher - who is a breath of fresh air because she really does have the experience and care that my parents have been looking for:)

*my awesome speech therapist, whom I have been reunited with! (I first met her when I was two, when my parents thought all I had was a speech impediment - it was she who, with a heavy heart, said that they should look at "the possibility of something else" because I was "exhibiting behaviors that were common with kids on the autism spectrum". So basically, she set us all on the right track to my success!

*Pixar studios - without whom I wouldn't have gotten to know my most favorite movie characters of all time: WOODY and JESSIE. (Nemo comes a close second, though)

*and finally, Mr. Walt Disney - for creating a world where even kids like me can feel magical. *sigh* (Plus, it helps that you do this for us! A million thanks!)

Have a wonderful Thanksgiving, everybody ~ *hugs*

Untitled....sort of!

2008-11-26T06:28:00.000-08:00

(pic by NBear - she "stole" my camera from its safe nest in our bookshelf, and when I found it, there were a whole bunch of pics she had taken *which now explains the nonstop giggling I heard*! So - expect a-pic-a-post for your entertainment:)

Alright - this entry is inspired by this post.

It's funny how life works, isn't it? Sometimes you see signs, and sometimes you don't. Sometimes you believe, and some times - well, you wish you didn't. Sometimes you find perfect examples of how karma weaves its magical self into your life, and then there are the times when...you can't find that valuable nano-hint to answer your "why me?" quip. Why?Why?Why?

Perhaps the most poignant part of my being a parent of an autistic child, is knowing that NBear was already written in my life plan. I am a Catholic, yes, but a good Catholic? a church-crazed Catholic? a 100% devout Catholic?...well, let's just say I'm not quite there yet. BUT - that still doesn't stop me from believing that He (HE!) knew this would come. HA! They say He never gives you what you can't handle? Are they serious? What sane person can handle crying until there is no more water running through their body? Now, I can. What person can stand seeing their child struggle to understand the world outside their own? Now, I can. What kind of idiot thinks an all-loving, all-powerful being could PLAN such a devastating fate for a person?

Now, I do.

Oddly enough, my mother was the magic piece to this puzzle. She told me that her co-worker finally (and I hope lovingly) said to her, "Why do you keep asking why YOU? Who do you think "deserves" an autistic grandchild then? Are you willing to point out someone else who should have gotten NBear?" ....and then, like Eli Stone, I remember hearing the choir in my head belt out the Halleluiah chorus, and the smoke finally cleared: she is MINE for a reason. She is OURS for a reason! :)

There were no "impending signs" that I would have an autistic child, and during my pregnancy I didn't have a lick of caffeine or sushi (which were major withdrawals, and more than I can say for the other two!) - but, there she was:) I'm guessing God knows us so well, He'd know who'd read the signs a lot better - so obviously, that wasn't me! *lol*

One thing's for sure: I'm glad to know that my family and I are not alone, and that the love and support we feel from all of you is something we are thankful for - not just on Turkey days, but for a lifetime!

Hmmmmm......having NBear = finding others who will help and understand, and be the proof that there is still good in this world.

I think I hear the choir again ;)

something you don't hear everyday!

2008-11-25T19:02:00.000-08:00

(pic taken by NBear :) Can you name the show?

Setting: NBear's Parent-Teacher Conference in her classroom

Characters in scene:
* Mommybear
* the Huz
* N,M,and S Bear(s) - yes, ALL of them *sigh*
* Mrs. A (teacher)
*Ms. C - speech therapist

Note - this dialogue occurs at the end of the conference, right before we were ready to say goodbye!

MB:

I'm glad she's doing well! You know, we still hear her scripting - doing her "tv talk" and all that, but she doesn't do it as much as before. The good thing is, she also seems to be generalizing things in her scripting!

Ms.C:

Actually, scripting isn't a bad thing!

Mrs. A:

No, not at all - in fact, it shows that the child is processing something, and is practicing language.

MB and the Huz:

Whaaa...? All this time we always thought it was bad thing that she was exhibiting these behaviors - they were always something we felt we should work to get rid of! No?

Ms. C:

You can build off of the scripting. If you see that she has a problem with pronouns (which she does) have her replace the name in the line she is using with the correct pronoun! Even echolalia is good, in a way! It also shows that the child is practicing language skills, and it doesn't always last long!

Mrs. A

I had a student (side to Ms. C) - remember him? who was quite severe with his echolalia, and now he hardly does it! NBear isn't even that bad - her communication skills are much better than his were. *smiles*

Wow - wow - wow.

Scripting and echolalia not a bad thing, huh?

Whudda thunk?

How is she?

2008-11-23T06:55:00.000-08:00

Shame on me - (You're right, Mrs. C!) I haven't posted lately about HOW my NBear has been doing! So, since I am the queen of enumeration...and okay, I have little SBear comfy in the crook of my left arm, which doesn't allow for thorough keyboard usage...allow me to enumerate, and forgive me (regular readers) if all this sounds uber-repetitive:

1) This week marked week 4 of chelation. She gets her DMSA suppositories on Friday and Saturdays right before bed. The only physical reaction we see is the increase in her nosebleeds. Dr. Mielke said it wasn't caused by the DMSA per se, but by the fact that she was losing Vitamin K in the process. She now gets drops as needed. Yes, they've helped :)

2) Her language has definitely increased. Indeed, it has. Of course, I don't know if chelation is the sole factor for this monumental moment - being that the poor kid has more meds than her grandparents will probably have to take in their lifetime! But yes, even skeptic-at-times mommy has to admit that she has made major gains in this area: she now asks a lot of questions (albeit simple ones), she can answer questions a lot better than she did a few months ago (still working on the "why" ones, but she has been doing well with "what happened?" *biggie!!!*) She plays a lot more with sister MBear, and their conversations are both hilarious and heartwarming:) *must post dialogue one of these days, when I am not suffering from heavy-baby-on-arm fatigue* Perhaps the biggest language aspect I've noticed is her ability to generalize her "tv talk". For example, if she's quoting a Dora the Explorer episode, she will replace a character name with MBear's name (*lol*) or change an animal in the "scene" to something she is already holding - a stuffed animal, another toy, an article of clothing, or mommy's beloved digital camera.

3) A is for AWARE. Now this...is...huge. She is now our official town crier. She reports all things - from MBear's potty training mishaps (Mommy! MBear is poopoo upstairs! Upstairs! One day she simply carried her out of the playroom and plopped her in front of us - I suppose the smell got unbearable at that point), to SBear's adventurous streaks (Oh no! SBear is going up the stairs!). She has also been great at reminding us to do things - the other day the Huz forgot about the B-12 shot he was supposed to give her, so she took matters into her own hands (don't worry, this doesn't get ugly!) and took the syringe container out of the fridge drawer for the Huz to see! :)

4)...and D is for DISOBEDIENT. Oh boy. I don't know if it's the regression moments often associated with chelation (It is generally expected that while the child is taking the chelator, the "on" days, the child will experience some regression as the metals move through his/her body, altho some parents do report that their children actually do better on the "on" days than on the "off" days. Then the first "off" day, the remaining free-floating metals will re-bind into the body, so that day can also be problematic for the child, and for some children the first "off" day is actually the worst day. If the child is not improved after the first "off" day, after the first 2-3 rounds, you would reassess the protocol to determine if perhaps you should choose a different protocol. If your protocol includes ALA, also consider that your child may have developed a yeast issue. *taken from this*), or simply that she is now actively aware of how to test the waters of our sanity - but either way, NBear can be a pill! (I say yes! I say yes, Mommy! or No! No veg-a-bols! I don't want the veg-a-bols!) *ugh* The "good" thing is, I'm not even considering her autism as a factor in that statement.

Okay.
Kid-on-arm-fatigue is at its peak.
Later!

from Cyndi's (Matthew's mommy) blog

2008-11-23T06:45:00.000-08:00

10 Commandments for Parents w/ Special Needs Kids

*Take one day at a time, and take that day positively. You don't have control over the future, but you do have control over today.

*Never underestimate your child's potential. Allow him, encourage him, expect him to develop to the best of his abilities.

*Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.

*Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.

*Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.

*Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends or the public.

*Be honest with your feelings. You can't be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.

*Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished.

*Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.

*Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.

Author Unknown

Ah and Oh

2008-11-22T18:08:00.000-08:00

After reading this interesting post by a co-blogger, (I must admit I have yet to watch the youtube vid that accompanies it) I was filled with both elation and devastation.

Ah. The light at the end of the tunnel has suddenly become a tad brighter for those of us who have been searching for answers. (If there is any true substance to this interview?) Oh. I was the parent who said "Just give her ALL those shots at once - I really don't want her to come back and experience more pain!" I swear, if there was ever a visual in my head that was clear as day, it is of the Huz and myself standing in the Kaiser vaccination room - a baby NBear laying unsuspecting on the bed - and a line of freshly uncapped syringes on a blue tray next to her. Five of them.

People often ask themselves what superpower they would want if they could have it.....

No rocket science needed here to know mine. :(

I know, I know - it's not my fault, how could I have known, there is yet to be any rock-hard evidence for what causes it....we've all been comforted by those thoughts one time or another, and truly and honestly, I am nothing but thankful for the kind people God has sent our way. It's just that - not a day goes by when I wish we didn't have to prepare any medications for her, when I wish she wouldn't have to miss out on all the gluten and dairy (and egg) goodies other kiddies were enjoying, when I wish SOMEBODY - ANYBODY - could have told us that something as "normal" as vaccinations should be taken in stride........so yes, I know. *sigh*

She has come such a long way, dear friends. Many of our children have, and there is much to celebrate. Forgive me for having a day like this one. Ah, I'll get over it :)

...............p.s.
As I type, we are enjoying a home-cooked meal at LaVieJoie's abode in celebration of her hubby's birthday. She made the effort to prepare a gfcf chicken dish for NBear - which she first marinated in fresh orange juice, salt and pepper, before frying in olive oil. The chicken lasted less than 3 minutes on NBear's plate. :) Thanks, Joie!

School's Cool...

2008-11-18T00:20:00.000-08:00

.....for our nephew Nate, who attends this institution in Hawaii. Don't know much about it, except through word from his mom (Huz's first cousin), who says that both she and Nate love it :)

Of course the inevitable question is - why the heck are these places so expensive? *groan*

Are you ZEN yet?

2008-11-17T23:39:00.000-08:00

Zen and the parent with an autistic child = match made in heaven. We all know that stress levels in our household can reach past the boiling point, so it's nice to know that there are places where we can be (mentally) soothed.

Enter an old college classmate of mine, Leo Babauta. (for those of you not from Guam, it's pronounced Bah-Baw-Tah:) I was able to meet up with Leo again on our recent Guam trek - his wife happened to be the Matron of Honor at the wedding where the Huz was the Best Man. *Still with me? ...Welcome to small island living! * Leo is a blogger du jour who started this wonderful (not to mention lucrative) website, appropriately called Zen Habits.

It's funny - he also has another blog, dedicated to writing, in which he gives advice about being a good blogger, and.....oh boy.

No wonder I don't have as many subscriptions! LOL!

If you'd like to put a face to the name - enjoy this video, in which he is interviewed by another friend of mine, Jason Salas! Josie Moyer (another popular Guam blogger) appears on the video "cover", but Leo is the first interview. (Of COURSE I'm inspired - I need to write more about my wonderful muse! NBEAR forevah! )

How Halloween went....

2008-11-10T21:51:00.000-08:00

These three have been Trick-or-treating together (how's that for alliteration?) since they were born! When little JK (on the right) saw the man open the door to hand out candy, he very clearly said "Whoa - what a scary-looking guy!" Errr...let's just say he didn't even have a mask on. Poor guy.
The other JBear (on the left) is LaVieJoie's son, Joshie:)

NBear did such an awesome job going up to the doors and saying the infamous Halloween candy-begging lines! This was the first time I didn't see her freak out when she saw people in masks:)

YUP. The weather was not very cooperative that evening. See SBear with Huz? She found the see-through contraption extremely amusing!

I believe this was House # 4???

TWISTER! (See NBear? Um, at least she knew her right from left - just needed a bit more practice on game rules!) Joshie rocked!

P is for FALL

2008-10-27T19:38:00.000-07:00

Pumpkins:
* went to a Pumpkin Patch on Sunday (weren't very smart and took the girls right after church, so our pics have them in their Sunday best, walking on the dust-and-hay covered "patch"). NBear and MBear had fun choosing their orange friends!

Previews:
Mommybear decided to take preview pics of the girls' Halloween costumes (NBear's FAVORITE day, I assure you!). NBear is Cinderella, sans the blonde wig; MBear is a ladybug (I don't have the heart to tell her she's not a bumblebee); and little SBear will celebrate her first trick or treating session dressed as a purple butterfly. They are collectively - and lovingly - called, My Princess and her Pests. *HAHA*

Now that NBear has gotten over the mountain of sickness that plagued all of us these past two weeks, I'm looking forward to another chelation session this weekend.

Her Vitamin K is never far away, either!

Oceans and Mermaids and Questions, oh my!

2008-10-26T08:48:00.000-07:00

My inspiration for today's post comes from Josie, whose entry and pics truly hit home:)

I don't know if I've already mentioned this, but the school psychologist at my school site once told me that almost all of the students she had worked with (who were on the ASD spectrum) had some form of attachment (in NBear's case - obsession) to the Marine Universe!

I was always amazed at how NBear took to the water so well, and at such an early age. *Alright, alright - so she screamed bloody murder the very first time I put those floating arm bands on her and she realized her feet were dangling in liquid, but a few minutes after that, she was hooked!* She had absolutely no fear of letting go of the gutters when were at pools, and when she finally had her chance to swim "in a REAL ocean" on our visit to Guam, the Huz had to go in and pull her back to shore because she obviously didn't understand the concept of - the water doesn't get any shallower the farther you go...and, the fish don't get any smaller!

*pictured below is the ocean she swam in, as seen from our hotel room*

She is the reason for out yearly trek to the Monterey Bay Aquarium. I used to think that it was inevitable for the Huz and me to have a child who was a water-lover because (having grown up on an island), we were too! Just the sight of water sends wild electrical pulses through my skin that seem to say "Jump in! Jump in! Jump in!" , and if the Huz could, he'd probably sleep with a speargun and fins by his side - his version of teddy bears! So it was both enlightening and odd for me to discover that a fascination with the marine world was a common thread with ASD kids - and I'm not talking just loving to swim. I mean, knowing the ins and outs of marine animals as well! It's absolutely mind-boggling...

Why, though? Who knows? Carolyn also mentioned a surfing program that worked wonders for her son Tim, and I hope I also get a chance one day to bring NBear to one of those sessions. :) She is definitely my little mermaid! (Did I also mention that she is a die-hard fan of Disney's Little Mermaid? She also loves the Backyardigan episode when the characters imagine themselves as mermaids!)

Of course, sister MBear (pictured below with friend J2H on the right- she is also the 2nd of three girls, daughter of one of mommybear's BFFs, JGH) didn't take to the liquid heaven at all, and preferred the much-safer chlorinated areas. She did, however, enjoy the breathtaking view!

...and finally (the Huz has also requested this), I need to add that NBear is the new poster child for How To Ask Questions. She is soooo curious, it's funny! Could the shell be cracking a bit more? Although she still struggles with "Why" questions, she certainly has a bit more of a hold on the other ones:

*Mommy, are you scared? (after seeing a preview of an HBO vampire series)

*Daddy, what are you doing?

*Where's MBear?

*Which way do we go?

*What are you doing? (A BIG one!)

*Who's that?

The more she asks, the more we realize how aware she's becoming.

My little mermaid...

Vitamin K....

2008-10-25T14:05:00.001-07:00

...was suggested (by Dr. Mielke) for the nosebleeds. Apparently, with chelation, the wonderful blood-clotting capability our body has is diminshed.

So - add THAT to our list of "have-to-gives".

No nosebleeds today, thank goodness!

...keep bleeding, I keep keep bleeding love!

2008-10-23T11:41:00.001-07:00

Okay, now this is ridiculous.

This is Day 4 of NBear's nosebleeds. Something tells me this is not just related to her irritated sinuses, and needs to be addressed. I'm wondering if any other people who've gone through chelation for their child has experienced something similar.

Anyone?

Still going to BaROCK the vote, but.....

2008-10-23T02:34:00.000-07:00

...I thought this was interesting. :)

Side to the Huz:
Whaddaya think, honey?

on hold :(

2008-10-23T02:17:00.001-07:00

*sigh*

Poor, poor NBear got so sick this week. It started as a high fever for a few days, and then the doc told us it was the dreaded strep-throat. *sob*

She is now on antibiotics for 10 days (thank goodness she can take pills - her biomeds program has been giving her a lot of practice!), and - as per Dr. Mielke - we will have to stop chelating until she gets better.

I am more horrified at the fact that she has been getting really bad nosebleeds for the past 3 days. Nosebleeds run in my family (along with the much-envied bad tempers and OCD), but this is crazy! NBear's nosebleeds are like Morton Salt's motto: When it rains....yup, you know the rest! They can easily last between 5-7 minutes, at the least. "Nose is bleeding" was an easy phrase for her to learn.

I'm hoping this bloody episode is not a result of the DMSA in our chelation program.
Really, really hoping.

chelation has begun!

2008-10-19T13:14:00.000-07:00

Gonna try to keep this as informative as I possibly can, since little SBear is sick (*sad*), and has not left my arms since this morning....I knew my triceps needed help! Also, I am not a fan of one-handed typing!

Okay. NBear is now officially on a chelation schedule, which is Friday and Saturday for eight weeks. Remember how the suppositories worked so well for her? We decided to stick with those, especially since the very FIRST challenge test showed a huge pull in the LEAD department! *I need to find that lab test to show you!* She took some blood tests beforehand to make sure all was well, and will take a follow-up urine test to see if the chelation is doing its thing.

Our concerns right now, of course, are the yeast flare-ups Dr. Mielke warned us about, as well as the possible harm to her liver. I'm so very worried about it all, but am ready in a heartbeat to stop if I see any red lights! My constant mantra is: leave no stone unturned, leave no stone unturned...

She is currently battling a bad cough and cold, which is accompanied by a low-grade fever. Unfortunately, sisters M and S Bears are in the same hole. Not hard to see that their immune systems were definitely compromised after all that traveling. :(

I leave you now with some pics of the island I call home, and my girls enjoying the tropical scenery:

Tropical Lady

2008-10-15T19:11:00.000-07:00

*survive a 12-day trip to much-loved Guam (traveling with the three kids!).....check

*take enough motrin to tranquilize an elephant when dealing with the onset of sinusitis, and MSG migraines - it was the tropic's way of saying "welcome back, we missed your occasional misery"...check

*fight the urge to reschedule the flight back to CA because of the sudden appearance of the(insert expletive here) stomach flu.....check

*report back to work the day AFTER your early morning arrival from a 12-hour flight, which crossed over the international date line. May I add that being jet-lagged was worse than any hangover I had ever experienced.Ever......check

*crash and burn again in two days, while experiencing excruciating flu-like symptoms. Listen in utter disbelief as your doc tells you that you have strep throat.....check (Mr. Magoo has better luck than I do!)

*begin to feel better, and BLOG.......check :)*sigh*

Alright - there you have it! My excuses - reasons - for not setting this keyboard on fire anytime sooner. I'll tell you, though - my NBear has certainly fared much better than I had! She had a great time on the flight, and was - hands-down, the best behaved of the three :) We won't count the last airplane ride, when we finally landed at SFO. She was so tired and wanted to sleep, she refused to disembark!
Helpful hint: Continental Airlines offers a gluten-free meal on some flights (unfortunately, it included some egg, which NBear is allergic to)

Guam was an absolute blast for her and sister MBear, and I promise to post some pics soon. Who wouldn't enjoy a vacation jam-packed with pools, the ocean (what mommybear calls the REAL KIND!), and an endless supply of goodies from relatives? The Huz and I had our share of heartwarming moments whenever we watched our Tres Marias frolicking in our old childhood spots! My little corner of paradise did have its share of flaws, however.....

1) It was almost impossible to continue NBear's GFCF diet 100%, because there weren't really any grocery stores dedicated to that kind of lifestyle. Let's just say the AFP tabs (as I've mentioned earlier) were a life-saver! We did find that there was more awareness about organic and healthy foods, and loved Healthy Hearts :) *Thanks, CC for the tip* We found most of NBear's Whole Foods skin care products there, which was a relief.

2) Almost everyone we spoke to had not heard of Jenny's book. Not that they had any reason to read it, but it was just funny how you could bring that up here - autism community or not - and someone's heard of it. Hmmmm...perhaps people in good 'ole CA are just exposed to more media tactics than my beloved islanders are! *lol* But seriously - it was just odd;)

3) The autism community back home seemed promising when we saw an ad on TV about some kind of social group - so, like eager beavers, the Huz and I wrote down the numbers and (why am I not surprised?) lo and behold - about all the people we knew, including my in-laws and MissFABulous, knew one of the ladies personally. Welcome to Guam! The Huz was the one who spoke to her on the phone, and even he admits that he may have overwhelmed her with the information he shared about NBear's biomeds. May have? We left her our copy of Overcoming Autism , and hope she is able to find time to read it. It's not a book about biomeds (I'm sure Huz suggested Jenny's bestseller), but it's one I'm sure she'll find helpful. Here's the local website for their social community.

So - if anyone plans a visit to a small little patch of heaven in the Philippine Sea anytime soon, (the food is GREAT!) - don't say you haven't been warned! HAHA!

nite:)
si mommybear

Guam-ing it!

2008-10-01T17:53:00.000-07:00

Hafa Adai Todo Mauleg, how are you?
(if I remember my spelling!)

Sorry for the long absence, yet again! As I type, NBear and sisters are enjoying the heat and humidity of our long-missed little island of Guam. *anyone need a map?*

More details on the plane ride later - but the BEST bit of advice I have for parents whose children are on the GFCF diet is....

PACK THOSE AFP TABLETS!

~mommybear

he said she said

2008-09-20T01:42:00.000-07:00

Me: I haven't posted in a while, honey...I've been so tired and busy...

Him: I know, but you really should post about how she's talking so much now! You know, how she puts better sentences together, she's playing more with MBear...about how the antivirals seem to be doing their job, how she is able to do her (first grade) homework so quickly and stay focused - you know, all that?

Me: Well? Why don't YOU do it, then? *smiling wearily* I'll give you my password, then you ca...

Him: ...but I don't write as well as you do.

Me: *heaving a drawn-out, exhausted sigh* oh..kay......*snore*

mainstreaming and other updates!

2008-09-13T15:56:00.001-07:00

Check out this super-cute message from NBear's mainstreaming teacher:

(sent via email)

MommyBear, She did fantastic on Friday also. She and I have a system where every time she lies down or rolls on the carpet, I count to 3. She gets up immediately after I count 1. Also transitioning, she does well with numbers. She had a spelling test on Friday and was able to follow. Of course, thanks to NBear spelling it out everyone benefitted. :)

Mrs. MT

Spelling her words OUT LOUD?
Whowudda thought?........*wink*

*deep breath* Now that I'm here in update land, I've decided to enumerate the ongoings of the last few days for ease of mind (on my part), and ease of reading (on yours):

1) the whole suppository (DMSA - chelation) deal went surprisingly well last night! She kept still enough that administering it was a success. I followed the directions and had her lay on her side, with her knees to her chest. Huz kept her occupied by reading her favorite Dora book with her. Now (as is always the case, it seems) we wait for the results after we send the test out on Monday. *happy thoughts and prayers needed here*

* I have to add that it was SO MUCH easier to do this challenge test because we only needed to take her first morning urine sample (since she slept through the night). That sure as heck beats having to follow her around for 6-8 hours, like a desert nomad collecting water.*

2) Next item on the agenda - the antivirals. Important note on Virastop, Acyclovir, and OLE: hang in there, guys! Trust me when I say that I actually had thoughts of giving up because NBear had become so different in the past 3 weeks- irritable, defiant (very!), apathetic, hyper - and I was so mad at the possibility that these meds were making her worse, and would KEEP her like this. She was also back on Diflucan at this point. The last three days have been the light at the end of the tunnel, though. So, you can make your appearance now, Mr. Sigh of Relief. :)

*She did have a mild rash on her back and upper thighs, which most people (including the Huz)would probably say is viral die-off. It looked a lot like eczema to me, but who knows? After a few scratching sessions, NBear seemed fine.*

Re: mainstreaming

2008-09-12T18:06:00.000-07:00

It all started with this note in NBear's communication notebook:

9/2/08
NBear will start her mainstreaming tomorrow in Mrs. MT's class (room 4). She'll join the line of Mrs. MT and will stay with Mrs. MT until 9:45am. Mrs. MT wants to start without an aide. [I circled that last sentence and wrote: "What about fading?" next to it] Also, I'm sending home a "words for writing" guide. You can use the words as she forms the letters.

Ms. SDCT

....and turned into this non-person-to-person conversational piece! *LOL*

9/2/08
Please know that I am extremely nervous about sending her to her mainstreaming class without an aide. :( To start, NBear is not familiar with any of the students - so that will definitely be to her disadvantage. I'm very happy that Mrs. MT is willing to try out this arrangement, but I don't want her to become frustrated when NBear gets distracted - or worse, distracts her students. (Just my two cents).

I am looking forward to hearing about how her first day of mainstreaming went. Please email me when you get the chance.

- mommyBear

9/3/08 (via email)
NBear's first day of mainstreaming went well, but was not able to be on her own. In the beginning, the aide was just outside Room 4. He went inside to support NBear - when he saw her put her face down on the desk, rolled on the floor instead of following what the other kids were doing. After around 5 minutes - she was able to join the group, tried to listen, answered a question and wrote a one-sentence journal about a flower. She required constant redirection to get focus. We will continue to have an aide with her.

You can e-mail Mrs. MT. Don't worry, I have been mainstreaming kids in her room and we never had a problem. She's great with our kids.

Mrs. SDCT

9/3/08 (email reply)
Thanks so much for letting me know. It’s also good to know that Mrs. MT has been so supportive to SDC kids – that’s a relief, and makes me feel better knowing NBear is in her class. We all hope for the day she won’t need an aide.

Please give me her email, so I can also touch base with her, and vice versa.

I really appreciate you keeping me informed, Ms. SDCT.

~mommybear

9/3/08
You already have it in NBear's notebook. I've already talked to her and you can e-mail her.

~Mrs. SDCT

9/3/08
Hahaha J – sorry, Mrs. SDCT – I know that it is in NBear’s notebook, however, I am still at work. I can’t remember what her first name was.

~mommybear

9/5/08 *Yes, it was sent ALL-CAPS....oh well:)*

NBEAR'S GETTING BETTER EVERYDAY IN HER MAINSTREAMING. MRS. MT SENT THE BMT AWAY AND SHE DID WHAT THE REST WERE DOING IN HER CLASS. NBEAR STAYED THERE UNTIL 10 AM. IT WAS NBEAR WHO TOLD MRS. MT THAT SHE HAD TO GO.

AT ROOM 16 SHE DID A LOT OF WORK AND HAD A CHANCE TO TAKE HER BREAK AS WELL ON THE COMPUTER (15 MINUTES) AND ON THE TRAMPOLINE.

I'LL SEE YOU NEXT THURSDAY from 3:45 - 4:05.
(from Mrs. SDCT)

*So far, so good! Keep in mind that NBear is in the 2nd grade, though - and her mainstreaming class is a combo 1st and 2nd grade. :)*

Where is it?

2008-09-10T15:43:00.000-07:00

My sense of order and sanity, guys?

I know I left it here somewhere....

So sorry I haven't been my old "post-er" self. So much to tell about NBear and her adventures in antiviral and suppository land (the latter one's still pending, but at least we have the little monsters, finally!)

I miss all my readers and co-bloggers, and have read up on most of my blogger pals' entries - I'm also a comment freak, so you'll know when I've visited:)

Carpe Diem! (bear with me - thought I'd type the first exclamation that popped in my head)

.....dang it - I thought I saw it under my bag...but it was just my sense of direction. Been missing THAT one for a while too.....

*In other news - Huz thought we should have cut NBear's hair like Posh Spice's alter ego. I.don't.think.so.

school daze

2008-09-01T23:48:00.001-07:00

Yes, school has begun for NBear - since last week, actually.

Thought these were cute - the first one says she's EIGHT. *lol* I'm wondering what aide she managed to convince for that one...nice self-portrait, though! :)

Second pic shows a math skill strategy called TOUCH MATH. It is wonderful! NBear does so well on it. Her ABA friend Mandy (whom she still misses and loves) worked wonders with her at home, using this technique.

And the third pic?

Let's just say, the Huz and I are loving her teacher already. *wink*

uplifts and updos

2008-09-01T23:03:00.000-07:00

Calm. Nice and calm.

I'm glad the past few days have been a bit better! (For NBear, not for me - still going insane trying to balance home life and going-back-to-work life. ugh) She is no longer the Tasmanian Devil she was a few days back. Thank goodness. Took her to work today - sans students - and she was her very relaxed self. Well, sort of - but today was better, nonetheless! *lol*

Perhaps the Huz was right with the whole die-off thing. (?) He still keeps the viral meds at twice a day (Acyclovir) even if it calls for 3 times a day, though. His reason being that "she already gets a lot of anti virals." Done.

In other news, I took NBear to get a haircut this morning because I could no longer stand the fact that she looks like a mare gone mad. (So does MBear, for that matter). To my dismay, Little Scissors was closed; however, the fates were on our side today when I saw a sign that read "Haircuts" at a strip mall close to work! *yeah*

I hated that I had reacted so judgementally, but when I first saw the small, Asian man with a goatee that rivaled a Chinese sifu's, I thought this entire experience was going to be a bad idea for NBear. HE is going to cut my daughter's hair??? In the past, NBear had such an aversion to males. When she was taking swim lessons and her teacher K was absent, she REFUSED to get in the water simply because her sub was male. And fourteen. (Who knows?) So naturally, my heart sank when I saw Mr. Hair Person.

Boy - if there was ever a time I was DEAD WRONG about first impressions, this would be it.

Mr. Hair was awesome with NBear! I told him she was autistic, but his weak smile and quick nod was an immediate sign that he didn't know what the heck I was talking about. He simply continued to cut, which was fine:) I realized after a few minutes that I felt odd, like something was wrong...and then I realized what it was: I was actually SITTING, and enjoying the US magazine supply this place had! O...M....G! NBear was actually okay without me by her side -- I screamed joyful phrases - no, ECSTATIC phrases - in my head. It was truly miraculous :)

*clearing throat* Now, just because I was sitting, didn't mean she wasn't talking. Oh boy.

Are we done yet? Look at all the hair! Wow~are we almost done? Look, Mommy! Is cutting - NBear's haircut! Is cutting with scissors! Oh oh! Be careful! (that one cracked me and Mr. Hair up)

When he was done cutting, he turned the hairdryer on and I froze, knowing she would probably either slap her hands quickly over her ears, or "shut down" altogether. She always hated that part. Much to my delight, she simply turned to look at Mr. Hair and said a very confident "That's too HOT!" before allowing him to proceed. *whew*

I LOVED the results! We are definitely going to pay this guy another visit when the time comes.

(This isn't her best angle, but just so you get the idea)

(Although the Huz thought it should be shorter around the parts that frame her face - did we mention she has a weird habit of eating her hair?)

without you...

2008-08-28T22:52:00.000-07:00

My husband listened to my rant about NBear's increasingly "un-NBear-like" behavior and said, "It will get worse before it gets better". How much WORSE? Will she be ripping doors off their hinges next? Screaming at the top of her lungs like she did when she was two? Running crazy laps in the living room for no reason? (hence "crazy") Crying until our home feels like a flooded Florida beach house? I don't know what to do, I don't know what to think, but I do know what to feel: powerless. (By the way, the prescription meds she recently started - see pic in the previous post - is a milder form of the anti-viral drug VALTREX!)

It's times like these that help me remember the one sure-fire way to "liven up". It's a simple exercise that reminds you to celebrate your child, and the everyday gifts they give to you. I hope you'll join me. Follow the directions below! *teacher mode kicking in...has summer ended already???*

1) in your head, complete this sentence:
Without (name of child), I wouldn't _____________.

2) write your sentence as a comment if you wish!

3) for those of you who have more than one child (like me) feel free to write (or think of) a sentence for each one!

4) last - put an asterisk (*) by the name of your child(ren) if he or she is a special needs individual:)

Here's my list. Enjoy:

-- Without *NBear, I wouldn't have known what it felt like to have my heart grow so much, it's become too big for my chest. :)

-- Without MBear, I wouldn't have known that duets (on the car ride home) can be extremely stress-relieving, especially when the better voice belongs to the one riding in the car seat. :)

-- Without SBear, I wouldn't have believed that "calm babies" really DID exist, and are capable of smiling for hours on end! :)

what the heck is hapenning here?

2008-08-27T19:50:00.000-07:00

My NBear seems to have turned into the Tasmanian Devil.

Where is the calm girl we had no problems with when we went shopping? We took the entire herd to shop for a dress (for mommy - there's a wedding on Saturday!), and NBear acted like a child who had ingested 2 packs of chocolate-covered coffee beans! She was sooo not calm. I mean, sure - she was also talking up a storm, using great sentences, and had great eye contact, but all that also came with GREAT (uncontrolled) ENERGY!

Yes, of course the Huz also noticed. The poor guy took her grocery shopping today and came home looking like he crawled out of the bowels of a tornado. Perhaps the recent addition of these guys (pictured below) to NBear's program had something to do with it?:

Dear me. I guess I was in a daze when Acyclovir was discussed between the Huz and Dr. Mielke. I actually AGREED to this? *lol* It's used for herpes! And - did you see all the side effects? No wonder why! *groan* I vaguely remember that he wanted to try an anti-viral program on NBear BEFORE chelation, but the doc was quite reluctant to do so. (Something about NBear's immune deficiency not being up to par until after chelation, but in the end Huz was able to convince her to at least try this "switch" with NBear.) So, hello Acyclovir.

These two were also H-man's idea. He spoke to Dr. M about introducing these, and got her "ok" beforehand. I know some readers (like my new friend) have concerns about starting Virastop, but really all I've seen so far is (I'm afraid to say) ADHD-like behavior, confused behavior at times, and yes - defiant behavior. EVERYTHING is a NO. *granted, I love the sentences, but still:

"No! I don't want to go to school! No! My turn for the computer! No! I don't want to take a shower! No! No! NO!"

Oh - we've also noticed a frequent need to fidget with things - our faces, her father's ears (she had stopped doing that for a while), her clothes, to name a few. Seems like her sense of touch is heightened or something??? *sigh*

Hubby thinks it's the die-off from the Virastop. (he said I could quote him on that, so there.)

I'm just hoping it's temporary...................no matter what it is.

p.s. Dear Cult of Recovery - we are also (as shown in photo) adding OLE to this new deal. :) Nice to know we're in this fight together!

S-words

2008-08-24T08:58:00.001-07:00

To date, I am still sans suppositories and sanity. (the latter not being too much of a shock)
Called the pharmacy (love them) and it seems there was some sort of misunderstanding:

*Yes, a prescription for chelation suppositories. Dr. Mielke said she would call it in on Wednesday. [it was now Saturday]*

No, I'm sorry. We haven't received the call yet.

*Wha-?? Really?*

Really.

*Oh. [perplexed pause here] Oh. So I guess I have to call her office...?*

Yes, I would do that! I'm so sorry. (said hurriedly, but with a cheery voice, nonetheless)

...and that marked the end of the conversation. Oh well - it will just put us back a weekend, I suppose. I'm not exactly looking forward to this "experience" anyway. *shrug*

In other news, I gave NBear an MB-12 shot (for the first time) on Saturday. Call it the need for adventure. The Huz took SBear to her "gin-as-tick" class and before they left, I nonchalantly asked him if he had already administered the shot. No, not yet. I smiled to myself as the wheels in my head began to sputter and whir, and asked him if I could do it. His head snapped up when he looked at me. If..you...want to? That was all the push I needed. :)

I soon realized I needed more of a shove than a push.

For starters, NBear was already AWAKE. Huz always did it when she was asleep. (Except one other time, and when the memories of THAT event came back to me, I wondered why I ever decided to volunteer for this) In that memory, we asked NBear to lay on her tummy on the couch. Her constant whining and turning to see the oncoming needle was enough to cause us to heave sighs of defeat. Huz got it in, though, and that was that.

But that was HIM. Calm, patient, easy-going, and STRONGER than me. Enter me (think on-edge mommy with wailing 7-month old at her hip) and it no longer becomes a pretty picture.

me: Come on, NBear - time for "owie" butt, ok? *still wonder why it was an utter success at the get-go?*

NB: No! No owie butt, no!

me: It will be very fast! Very fast! Just lie down he...

NB: No lie down here, no! I don't want to lie down...I don't want owie!

(to read the dialogue in its entirety, simply re-read the above a hundred more times)

Thank goodness I don't have a fear of needles. I do have a fear of accidentally BENDING needles when the subject of your "poke" turns into the human jumping bean.

The bottom line (pun intended here) *lol* is that I DID IT! yes.

When H and Sbear came home, I managed to make everything look like a piece of cake. You gave it already? I thought you were going to wait for me? I waited for the air of confidence to fog the entire kitchen before I replied. "Nah - I managed to do it!"

I know he saw right through me. He managed a smile, though!

another appt, another round

2008-08-19T16:45:00.000-07:00

Saw Dr. Mielke yesterday afternoon, and the DMSA test we gave NBear a while back was not as successful as she had hoped. Are you kidding me? All that pee collection for THIS? She said something like, "It didn't show a big 'pull'", which basically means it didn't do a good job of extracting a large amount of the metal toxins in NBear's body. *feel free to gasp for air here*

So now what?

"I'd like to do the test again."

I felt the color drain from my face. Sure, the Huz mentioned that NBear had thrown up a little bit during the testing period (I swear, it was just a little - I personally feel she didn't lose any of the DMSA's effect) which then led to Dr. Mielke's concern that some of the meds must have come out, thus affecting the level of chelation.

"You mean...you want us to give her the tablets again? Where would we be right now if the test results showed a good pull?"

She said we'd be looking at scheduling a chelation program for NBear, according to what our financial situation was. So you mean you also have a program for "broker-than-broke"?

I'm sorry, but I wasn't happy with this appointment at all. I know, I know - Dr. Mielke doesn't write up the test results herself, but something just irked me about how all this was being handled. First of all, if the kid THREW UP because of the tablets, why would you want to try that route again? I didn't have the heart to see her go through that, even if it was just a tad. Second, I was not about to shell out major bucks for another follow-up appointment just to hear the same thing! So...I did what i thought was best.

I suggested we try another route.
Suppositories.
Yes, suppositories.

Poor NBear, but I just need to know that another route will be better, even if this is a bit invasive. Our other choice would be via I.V., and to be quite honest, I wouldn't have a problem with that either. But our kid and our wallets sure would...

Those stupid metals. If I could, I'd pull an "Inner Space" move and vacuum them out myself.

As always, wish us luck.

*If there are any parents out there who have tried this with their kid - I need you!*

other things...

2008-08-18T11:01:00.000-07:00

Checked off MommyBear's "To-Do" list:

*forget to give NBear one dose of glutathione lotion AND Probiotics, and regret it for the rest of the trip :(
*share NBear's biomedical treatment with a stranger at Disneyland (You know, Jenny McCarthy's book?) - Smile and get even more excited when she mentions that she too is a teacher, and shares a concern for parents who are afraid to exit the world of denial!
*give NBear a few AFP tablets - we know she may be exposed to foods with a certain amount of gluten in them
*try to maintain composure when the kids tear the hotel room apart
*be creative when writing a comment card for the hotel

snippets (did I spell that right?)

2008-08-18T09:08:00.000-07:00

These were checked off NBear's "To-Do" list:

* pack Woody and Jessie (and later find the absolute BEST Jessie cowgirl hat ever!!!)

* go with Daddy to get the Disability pass from the Disney City Hall

* enjoy my favorite rides (carousel, Dumbo, Snow White, Casey Jr. , Pooh- to name a few)

* try out new ones (Haunted Mansion, Toontown roller coaster, Indiana Jones)

* tell Mommy that I NEVER want to ride Pirates of the Carribean or the Haunted Mansion again! (she was sad because she loves both)

*do not be upset when we can't ride "It's A Small World": when something is closed because they want to 'improve' it, that's actually a good thing!

* take pictures with the infamous Mouse!

* give Minnie Mouse a hug (and make sure MBear gets to hug her too, even if it's just her leg)

*enjoy the fireworks without "shutting down" *yes!* (cover ears, though)

*watch Fantasmic -- I'm glad I saw Woody and Buzz during the finale, as it took a lot of my fear away. Darn loud noises!

*explore California Adventures (day 2)

*hang out with Auntie CP and Uncle AP

*scream in delight as our Sun Wheel gondola rocked back and forth (and wonder why everyone else on it seemed petrified with fear)

* watch Playhouse Disney Live on stage and not care if I sing louder than the cast members themselves (added note: Mbear was a total killjoy, refusing to even dance! Must tell her to have fun and let loose next time.)

*ride new rides (Toy Story, Monsters Inc., Ariel's carousel, Sun Wheel, Bug's Land rides)

*get angry at the fact that the Pixar parade included being squirted with water! (how can I be able to focus on Woody and Jessie if they have water pistols pointing at us?)

*go on Soarin' Over California TWICE! (and absolutely LOVE it!)

*get Daddy to convince me that getting even WETTER on that rapids ride would be considered "fun" (glad mommy packed those extra clothes!)

*go back to the hotel for a night swim...and watch the fireworks (again) from the pool!

*smile and thank God for another wonderful - actually, for an even BETTER - summer trip!

...must...get....energy...

2008-08-17T20:31:00.000-07:00

hello friends.

we have returned from the land of a million dreams (at least that's what the celebration is this year - I'm still incredibly jealous of the family that WON the one-night stay in the park's suite. Those buttheads!).
the huz is passed out on the couch. I doubt he'll be waking up anytime this month.
NBear and MBear - who enjoyed the long car nap - are bouncing off the walls in the next room.
SBear is carefully exploring the carpet she has not seen in three days. I could have sworn I left that chewed-up, saliva-drenched toy here...

Et moi?

...I am just stopping by to say that I am alive. not kicking, but still alive.

I will be my chipper self soon, I'm sure, and set this keyboard ablaze with tales of NBear's adventures this weekend.

But until then....does anyone know where the nearest pit stop is???zzzzzzzzzzzz.........

I want Disney-waynd, pwease! (Not without a PASS!)

2008-08-13T00:06:00.001-07:00

Oh boy. Wish us luck.

We will dare yet again to conquer the happiest place on earth (and California Adventures) with the three bears this weekend. Two bears was already a bit of a challenge last year - factor in the extra weight I had to carry when I was with child, and it adds up to an experience you hope to never have to repeat. *lol*

Nah...actually, we had a great time! Our fears of having to go through one of NBear's tantrums while in an hour-long queue, were quickly quelled when a friend of mine (thanks a million, JA!) suggested that we go to the Disneyland City Hall, and ask for a Disability Pass for NBear.

Yes! Disney considers autism a condition that is worthy of a "go-to-the-front-of-the-line" pass! How wonderful is that? :) That small ticket was the true magic for NBear that day. Bibbidi-Bobbidi-Boo!

We were able to ride almost everything in record time, which was great because it didn't give her the chance to realize how hot it was! This was before her biomeds program, when everything was still pretty much like walking on eggshells and fearing the worst! Her communication and social skills weren't as "developed" back then as they are now.

Sure, she still had her moments - like when she covered her ears for the first parts of the rides (I loved how she kept one hand on an ear while the other shot lasers at aliens - can you name that ride?) , and when she lost it for a good 10 minutes while watching the firework finale. (That was tough! She tried running away, crying, hands shoving down on her ears. We almost had to sit on her to calm her down. Not a happy memory at all, but at least it was at the end of the day!)

When it was over, her smile returned and she said "Aaaallll Done!" *sigh*

...If your heart is in your dream,

No request is too extreme.

When you wish upon a star,

As dreamers do.....

that day at church

2008-08-12T12:19:00.000-07:00

I figure, I'm never going to free myself from this recurring nightmare if I don't (finally) write it down. Thanks, Mrs. C. Nice to know we're not the only ones with this particular struggle.

My friends and family have heard this story at least once, I know. Yeah...I hate it too, but here it goes:

During my summer breaks, I try my best to go to daily mass at our church. Two years ago, while still pregnant with MBear, I decided to celebrate mass (with NBear) in the actual church building with the rest of the congregation- rather than in the crying room. Besides, she had been behaving very nicely for the past few days...so why not?

We walked in, sat down, and listened to the usual (lackluster) music and (monotonal) readings that define the daily Catholic mass. *waiting for the lightning to strike* I made sure we were seated as close to the exit as possible, should NBear's behavior deem the need to plunge back into the crying-room aquarium.

What happened next was incredibly insane. NBear walked up to the "big-bowl-thing-that-holds-the-holy-water", touched its intricate wood carving, and then came back to me. She did this about two more times, not making a sound, not running...and she was always in arm's reach. Which was why - when "woman-who-would-rue-this-day-forever" appeared, I was beyond shock.

I recognized her immediately not because I knew her, but because she had glanced in our direction earlier, from the OTHER SIDE (right, we were on the left) of the church! She walked over to us, and I was utterly speechless when she made a bee-line for my unsuspecting NBear, pointed a scrawny finger at her face and said something like "[You need to] Stop running!" If I was angry then, I turned unbelievably LIVID when NBear walked back toward her chair, doubled over, and put her head on the seat in pure surrender. Ms. WWWRTDF walked away like a triumphant George W. Bush after a presidential debate. Yup, there is no such thing.

As I rubbed NBear's back (she refused to pick her head up) and waited for the final blessing, my hands were shaking. My blood was pounding through my veins like a train gone wild. Ms. Crazy also didn't know that the pregnancy hormones my body now contained, were on fire. I was literally a moving inferno. Like a stalker gone mad, I had watched her as she walked up to receive holy communion (LIGHTNING? Hello?), and never took my eyes off of her so I knew exactly where she sat.

And she sat right next to two visiting Vietnamese nuns.

Ask me if I cared.

With NBear clutching tightly to my sweating hand, I found my way to her little entourage and gave.it.to.her. The memories of my exact words have been diminished over time, but the look on her face (and the nuns') hasn't.

I remember saying that I didn't appreciate what she had done to my child, that my child had autism and did she even know what that was? You know, I come to church everyday to pray that she gets better! Everyday I ask that He make her better. She wasn't even running! How dare you? I would've taken her out if she was running! Do you know what she did after you came to her? She put her head down on her chair and wouldn't look at me! *hands pointing furiously in all directions* Are you saying I should never take her to church, then? [No, I'm not saying that!] Well, you MIGHT AS WELL, after what you did to her! You know what, though? I'm actually GLAD you don't understand {I was too angry to explain that I was glad she didn't have any autistic children} - I would never expect you to understand what I'm going through, anyway! That's all I wanted to say!

I walked my shaky legs back to the car, realizing too late that NBear had turned around to say a meek "Bye!" to Ms. Crazy. She SO did not deserve that.

It was the first real all-out cry I had "performed" without an audience. Unless you consider a dashboard, windshield, and a confused doe-eyed angel an audience.

meeting Mrs. C.

2008-08-12T11:08:00.001-07:00

Friends of NBear (Carolyn and LAA, I hope you're reading!): just thought I'd introduce you to Mrs. C - mother of 6 (yes, SIX!), three of whom are on the autistic spectrum *I hope I got that right:) *. She also homeschools two of her angels.

I loved how I was able to relate to a lot of her posts. The following, from her blog, should be evidence of the fact that even A-Club members need a laugh! We all do. Thanks for the humor, Mrs. C. LOL!

(If you're not familiar with the original Serenity Prayer, I suggest you read it first - otherwise, you won't appreciate what follows. Trust me:)

*note: the words "Senility Prayer" and "Madame Monet" are links*

Senility Prayer
From Madame Monet:

Grant me the senility to forget the people I never cared for, the luck to run into those I do, and the eyesight to tell the difference.

Welcome to our A-Club! :)

teeth and tape

2008-08-11T08:40:00.000-07:00

My big girl NBear is losing her teeth.

In the first pic (taken last week) she smiled willingly, proud and beaming to show off how her "broken tooth" finally wiggled itself out of its gummy castle.

The second pic, however...(taken last night) was taken after a bout of screaming and utter devastation over losing yet another tooth. Alright, alright - so Huz decided it would be a good idea to yank the loose guy out with handy-dandy dental floss, and NBear was fine with it - until (of course) she realized there was no way to put it back. Make that - put them both back.

NBear: No tooth out! NOOOOOO! *holding both teeth (which H-man saved - hopefully for the tooth fairy and not to make a necklace with) in her fingers, shoving them both into their original gum sockets*

Huz: You can't put them back!...Okay, then - you want some tape? *chuckling to himself* I scowled at him for being so mean!

NBear: Tape, please! *still crying*

In the end, we both tried to convince her that the best was yet to come - that included taking a multitude of pics of her new tooth emerging into the great wide open! (told you I love puns). But sadly, that didn't reassure her at all :( She covered herself up with the comforter, repeating her "No tooth out!" mantra a few more times. I felt so bad when she peeked out a few minutes later, her cheeks wet with the tears she cried.

That did it. I read not one - but THREE bedtime stories to ease her pain. For me, that's a record. I made sure my "reader mode" was extra funny and expressive (which was a little difficult to do when sister MBear was always trying to correct my "mistakes" - No Mommy, that's HIPPO, not RHINO! fyi: it was a Hippo...but who's got the energry to argue with a 2 year-old at 9pm? Not I, said the mommy.)

Her giggles and laughter eventually became the magic serum for sleep.

at the pyoo-ter!

2008-08-09T20:11:00.000-07:00

Thought this was cute...

H-man was busy doing his daily "check-ups" at the computer (looking through his autism message boards and emails), and little SBear found the information absolutely fascinating! :)

Perhaps someone can help with a caption?

waking up

2008-08-08T16:44:00.000-07:00

On a recent trip to Wal-Mart (everyone's favorite, I know), Huz and I were going crazy trying to calm NBear down. It wasn't that we had to sit on her to try to control her, nor was it a tantrum thing. It was just.....odd for us to see her this way.

The girl wanted everything Wal-Mart had to offer. Eh.Vry.Thing. I want fish. I want toys. Oh wow - look at THAT Mommy! Mommy - Daddy, I want dvd. Look! It's Jenga! I want princess. I want princess car. I want bathing suit. Look at that bathing suit! Daddy? Wow! It's Diego and Doooooraaaaaa! I want hat. Look at that cowgirl hat. Cowgirl hat, pleeeaasse? I want cowgirl hat.

Everytime we said NO, she'd present a new case - stronger than the last one. With more words. Now part of why I wasn't going completely bonkers was the obvious: didn't I wish for this to happen one day anyway? Didn't I beg and bleed for the moment when she would react to stores the way "typical" kids would? Wasn't this something we had both been yearning for? Dr. Mielke had mentioned a moment of "awakening" - when the biomeds were doing their job. She warned that NBear would possibly experience a moment(s) when she would become more aware of her surroundings, and it would come across like a mad sugar rush. You're telling me.

And then, in the middle of my train of thoughts, it happened.

She caught sight of the cast of the Wonder Pets, in stuffed-animal form, and fixated on Tuck. (Did I mention she loves marine animals?) Oh boy. If you thought it was hard to take chewing gum out of your hair (yes, I speak from experience), NBear's immediate attachment to Tuck made that look like a walk in the park!

Oh wow! Wooonnder Pets! It's Tuck! And Linny, and MingMing! I want Tuck. Tuck is a turtle. I want cape. NBear is superhero! Mommy, Daddy - I want Tuck pwweeeaaaase. (that's the summarized version - otherwise, it'd take the rest of this post's text space). Every time we tried to distract her, she'd be nice enough to pay attention for a minute, and then say, "Tuck, please. Wonder Pets."

It didn't end there.

One day later: Mommy, I want car please. I want Walmart. Tuck! Wonder Pets please!

Two days later: (see above)
...then, on the third day, the Huz came home with these:

She lined them up for me when I told her I was going to take their picture. I laughed when I realized that she had placed them in the order they were mentioned in the theme song:

Linny, Tuck, and MingMing too! We're Wonder Pets and we'll help youuuuuuu!

for the Huz....just because :)

2008-08-07T21:50:00.000-07:00

Red Le Creuset pan - $120.00

(whaaat? for a PAN???..says the non-cooker)

Kitchen Tongs - $10.00

(I'm guessing....?)

Organic chicken from Nob Hill - $ 7.00

(sounds like a lucky number, anyway)

Coming home from a Hula session last night to a yummy, gluten-free, casein-free, everything but delicious-free chicken dinner........

(Come on, you know what to say.....) :)

No T.V. talk!

2008-08-07T14:21:00.000-07:00

My two new blog-world pals (Hi LAA and Carolyn!) have inspired me to discuss something very common in our A-Club world: scripting.

NBear was the queen of scripting! We had many moments where she'd have one-way conversations with us and simply recite the entire "Finding Nemo" dialogue. If she exhausted that movie, she'd move on to "Elmo's World" episodes - ALL of them.

Scripting is extremely odd, in that (at least in my experience) the child seems to know the "taking turn" rule of conversing, but not the "needing-to-be engaged-in-the-discussion" rule. Here's an example of how I remember some of our conversations with her:

Me: Hi, NBear!

NBear: Look at all the animals in the zooooo!!!

Me: Are you hungry?

NBear: What do you think, Dorothy? Should Elmo go to the zoo?

...you get the picture. Huz found a neat solution to this problem: the words "No TV Talk!" (interesting how the link for scripting has "No movie talk" in it - we thought we were the only ingenious ones! *LOL*)

If you thought it ended there, she was also the queen of BE KIND, REWIND. When she was into VHS tapes, all you'd hear was the constant whir of the tape machine as she repeated the same frame over, and over, and over again. It got even worse with the ease of DVD players:

*whirring noise*
Hi, I'm Elmo!

*whirring noise*

Hi, I'm Elmo!

*whirring noise*

Hi, I'm Elmo!

(that was the VHS)

(enter the DVD player)

*half-second pause*

This is my goldfish, Dorothy!

*half-second pause*

This is my goldfish, Dorothy!

*half-second pause*

This is my goldfish, Dorothy!

*For a similar "entertaining" segment, check out Jenny's Louder Than Words page 122:)*

Mind you, it took the fear of God to prevent the Huz and me from hurling the entire entertainment center out the window. (Plus the fact that I wasn't exactly American Gladiator material, and he wasn't willing to let go of the then-new TV we bought.)

I'm very happy to say that to date, though she still loves repeating shows, she will at least (for the most part) wait until the entire segment is over, before enjoying it for the ump-teenth time.

Oh. She's also great at using something else now:

Me: *singing* La-la-la-la...La-la-la-la...Elmo's woooorrrlld!

NBear: Mommy?

Me: Yes, sweetie?

NBear: *stern voice* NO T.V. TALK!

Mommy Bear the Teacher

2008-08-07T07:20:00.000-07:00

During one of my treasure hunts for blogs that discuss autism, I found Cafe Autism. One particular post (Why is the shopping list a secret?) hit me hard. In a nutshell, she describes her frustration in trying to get a school supply list for her child, who is an ESE [Exceptional Student Education] student. *Because schools nationwide seem to have an acronym competition going on, ESE translates to SDC [Special Day Class] in my 'hood. FYI*

I suggested she go right ahead and purchase items from the regular school list (who not?). I refuse to have anyone else become as reluctant as I once was, and end up doubting their child's capabilities, as I once did. How awful is that, huh? For shame! (Although this parent was definitely not one to back down! Yeah!)

I remember looking at the school list when NBear was younger and thinking to myself: "Scissors? SCISSORS? She can't even hold them the right way! Why would she need them now?" ...and a few months after I thought that atrocious thought, she brought home a bunch of cut-out shapes (I didn't even care at that point if her circle looked more like a chewed-up rag than the shape it was meant to depict) and handed them to me with her chubby fingers.

This part - the school part - is a battle fought on both fronts: YOURS (the parent), and THEIRS (the child). Unlike the other battles we fight for our children, this is perhaps the hardest because we have to leave them on the battlefield for some time, to fend for themselves. OF COURSE it's not the same for "normal" children. {note: the Huz just walked in and added, "I think the correct term for 'normal', is 'typical'} Those kids can actually tell when they're being hurt or insulted or teased...and (even better) can TELL their parents exactly what happened to them at school.

At this point, my NBear can tell us (she's doing so well trying to put her sentences together!) that she'd scraped her knee on the playground, but that's about it...for now. :)

Keep fighting, and know there are many (like me!) fighting alongside you.

*If you think the whole school supply list was bad, try purchasing a yearbook for your child, only to open it up and see that her entire SDC class had no names to go with their pictures. I've even heard stories of some schools not including their SDC classes in the books at all. :( I ranted and raved to my other co-teachers about the whole thing. Ugh.*

This is why homeschooling is not always a bad idea.

....if you have Mother Theresa's patience and aren't susceptible to cabin fever and claustrophobia, that is. (sound familiar, friends?)

You Go!

2008-08-06T23:23:00.000-07:00

This woman is the BEST.

Meet Dr. Leony Go, from the Fremont branch of Kaiser Permanente.

She has been my childrens' ONLY pediatrician. She is not only caring and easy to talk to about normal issues, but provides a TON of support when it comes to working together with Dr. Mielke for NBear's benefit.

I received a phone call from her the other day to discuss the most recent test Dr. M. requested, and she was all ears about how the whole DAN! experience was going. (So tell me again what DAN! stands for? I'd like to try to understand as much as I can.) Of course, like I do, she worries about chelation therapy. In the end however, her wonderful words were, "As long as you feel you are doing what's best!" :)

Need you ask if I'd totally recommend her for any other A-Club members?

for Carolyn and Tim

2008-08-06T11:18:00.001-07:00

Dear friends of Charlie,

Mommy read your post about Tim falling in love with the video camera, so she decided to give it a try:

It certainly took me a while to understand what she meant when she said, "Follow mommy with the camera, honey! Follow Mommy!" Did she really have to hop around like a bunny on hot stones? I mean, I WAS following her - with my own eyes. Then it occurred to me - I could SEE her on this contraption's screen! There you are, Mommy :) The neat thing was, I didn't need to look through an eye lens to see her. Mind you, I did try - I shut one eye and kept the other one open, but as I placed the open one on the black object on the camera's rear, Mommy told me that it was something called a battery. Weird.

It was still a bit hard for me to focus, and I can tell by the look in her eyes that she was digging deep in her cranium for other ways to get me to understand. (She has been a bit sad today...I wish I knew why. Thought I heard something about a passing...) So, as Mommy always does before she decides to call it a day, she let out a huge sigh and tried hopping around again.

And this time, though very slowly, I moved the camera in her direction...and kept her on that screen. :) *sigh* I'll need more practice, though.

Thanks for the inspiration!

Love,

NBear :)

AFP Tablets

2008-08-05T11:49:00.000-07:00

During our last meeting, Dr. Mielke gave us these tablets for NBear - being that her allergic reaction to gluten was higher than what the Doc had expected.

They're chewable, so easy for my "I-can-swallow-capsules-now-anyway" big girl to take. (try saying THAT 5 times in a row!) :)

They're nice to have, considering any possibility that she may ingest any type of gluten or casein. They also came at a perfect time, because we were planning our summer destinations: Monterey (*check!) and Disneyland in Anaheim. (Thought I'd add the city in, lest you thought we were insane enough to bring all three munchkins to Florida!)

She took two tablets after Monterey because we didn't pack her her usual gluten-free lunch (I had to endure the Huz's evil eyes because it was my suggestion that we try to survive without it). Fortunately, the cafe had hot dog and french fries available. Sans bun, of course. Still, we were being overly cautious.

It's just nice to know that these pills - and this website! - exist.

Pass it on!

The pic!

2008-08-05T11:28:00.000-07:00

YEAH! It worked!
This was the pic that was supposed to go with yesterday's post.

Here she is, front and center, at the Bat Ray touch pool (see it approaching in the background?).

I wasn't in the mood to touch wet, moving portobello mushrooms (as Huz described them), so I passed. Gross.

on my never-to-do-list

2008-08-04T18:47:00.000-07:00

Never again will I convince myself that going to the Monterey Bay Aquarium LATER than noon is a good idea. I mean NEVER.

NBear loves anything and everything that has to do with marine life, so of course MBA would be her heaven (or at least one of them - but I'm not into the whole reincarnation thing, so cancel that thought). In light of that, we make an effort to do a yearly pilgrimage to this world-famous aquarium universe.

We definitely paid the price for our late arrival. It was so crowded at the base of all the aquarium exhibits, that only Yao Ming would've gotten a good look at their fishy residents. *Hmph* Maybe not even him! The way everyone was jockeying for a spot, you would've thought Brad and Angelina were doing the feeding shows! One area even had people sitting on the floor in front of the tall Plexiglas - and something told me it was not because they were in awe of the wonders of the Kelp forest. Perhaps a peaceful surrender?

I didn't feel bad for my NBear, though. She was such an expert at weaving herself in and out of adult legs and bodies, getting to the glass was no problemo! Well, as they say in life - survival of the fittest.

I was going to add a pic at the Bat Ray touch pool, but I can't seem to upload any pics right now - a message pops up that says there's an INTERNAL ERROR. I tried other pics, and the result was the same.

Hmmm....perhaps it's blogspot's internal error and not my computer's? Could this possibly (more like hopefully) have anything to do with the whole SPAM mistake they made recently? I was good today and actually read the message on the dashboard.

Help.

enter my silver lining for today

2008-08-02T19:49:00.000-07:00

Forget about Shark Vacs and missing adapters!

This evening, when I was preparing to give NBear her meds, I dared to try what only her father had previously attempted: getting her to SWALLOW the caplets.

After a few tries with the trace mineral cap (she'd follow me and place it on the back of her tongue, but when she'd take a swig of her water I could see her tongue move the pill precariously to the right side of her mouth) I decided it was time for some visual and vocal help. (That, plus the poor capsule was getting battered and bruised in there - it was flat by the time she realized what needed to be done.)

Me: NBear.....you need to swallow the water, then aaaaallllll gooooonnnneee!

NBear: *confused look*

Me: *opening mouth wide* *gurgling sound* Cuuuuhhhhheeeeeee? Aaannnngggg Goooonnng!

NBear: *looking in my mouth*

Me: Okay, NBear - you have to swallow the water, and then no more medicine in your mouth, ok? All gone!

NBear: *swallows the water, and then opens her mouth to show that it is.....empty.* :)

What ensues is a crazy mother giving her daughter enough high-fives to last a lifetime. I'd say I gave her more than the number of fans Miley Cyrus has.

Plus, I threw in a bowl of Rice Dream ice cream.

Just because.

OH. Almost forgot - I won't be giving her any more of the large ZEN tablets to take in pill form, though. The poor bear was on a roll when she unfortunately gagged on that one. It took several gulps of H20 and a few extra moments of praise to get her to trust me again. *oops* It's a good thing she has perseverance.

I love you, NBear.

me

2008-08-02T17:13:00.000-07:00

*this is a MommyBear entry - read on if you don't mind a detour from NBear's adventures!*

Did I ever mention that I used to blame myself for NBear's love of lining things up? Of course, I had no idea at the time that it was an autistic trait - and I'm glad it's just about disappeared - but I do remember talking with my mom about how my extreme obsession with order (OCD?) may have rubbed off on my offspring.

Alas, I have to deal with the fact that I continue to be insane that way. The sad part is that NBear doesn't hold a candle to how much order means to me. (Believe me, A Club members know how tough the kids can be!) Here's today's example, enumerated:

1) Wanted to vacuum an area of the kitchen carpet, and decided to use the Shark vac the Huz bought for Xmas. It's light, it's cool...it's the one!

2) Vacuumed for a minute or two before the Shark bit the dust. (yup-pun here) Oh darn, should have charged it since December! My fault. It's a good thing I know EXACTLY where I put that charger! *smiling to myself*

3) Looked in I-swear-I-put-it-here drawer, and....it was not there.

4) Looked in perhaps-I-put-it-here-instead drawer and...it was NOT THERE.

5) Took a look in the I-know-I-absolutely-did-not-put-in-in-here-but-who-knows drawer, and...IT WAS NOT FREAKIN' THERE EITHER!

6) Called the Huz to ask if he had seen it, and tried to control my temper. Really. Tried. Hard.

7) Breathed. Took a few more breaths after that. Stared at the now-defunct Shark Vac lying limp on the carpet. Tried not to cry.

8) Tried even harder not to cry (I don't deal well with utter frustration). Called every store I could think of, and they said even though they did carry the VAC, they didn't carry the adapter.

9) See # 7

10) Screamed to myself in my head, and surrendered to the fact that I would have to order one online. I hate this. I really, really, hate this.

~ thanks for lasting with me as long as you have, my friends :)

Miso Happy!

2008-07-31T11:46:00.000-07:00

First of all, sorry for the (almost) obvious tribute to THAT song when I wrote the title for this post. It's time to clear your minds now, and focus! :) (You can always sing the original version later)

Your task for today is to find the magical phrase on the box that means "NBear can eat this!" *see it yet? It may be a bit blurry - I'm no Annie Leibovitz*

Of course, we also have to watch out for EGGS, but this pack didn't contain any! Words couldn't describe how happy the Huz was when he came home and presented this box to me. After all, he knew - just like I did, how much his NBear loooovvvveeeessss this soup....when accompanied with a mountain of white rice.

As they say in my grandmother's country, Itadakimasu!!!

*just occurred...

2008-07-31T11:33:00.000-07:00

...to me.* In his introduction to Jenny's book, Jerry J. Kartzinel (whose wonderful quote I use in my blog banner) writes the following about his son's recovery from autism:

"Fixing his diet required the removal of gluten-containing foods and all forms of dairy. What we experienced was staggering. We saw sleepless nights morph into complete and glorious SLEEP! By adding cod liver oil to his diet, we witnessed the return of eye contact and language!" (p. xvii)

Could something so elementary as adding FISH OIL to her diet really have made those recent pics as wonderful as they were?

I don't care. I'll take it. :)

the look of love:)

2008-07-30T17:31:00.001-07:00

This is big.

I took four pics of NBear with her grandparents (my in-laws) this morning, and...

in all four of the pics, she is LOOKING directly at the camera. *jumping for joy!*

Even better was that I didn't even:

1) have to trick her into looking at the cam, or
2) struggle to try to get her attention for each shot (having sisters MBear and SBear try to cooperate was another story, though!)

*lol* The funny thing was not realizing she had done such a great job until I looked at the pics.

Thank you, once again:) *looking skyward*

12ac

2008-07-29T12:25:00.000-07:00

'/['n'hjnm,,k
nnnnnn y78u5f4etgyy7lkl;k

''; fdfcshhljlkj;jjdhdhhshfg8uuyhjs.

"?
"

Translation:

Indeed, my older sister NBear is making progress! I enjoy the times she actually chooses - on her own- to play (and okay, fight) with me. Many times, mommy and daddy don't even have to prompt her! *yeah* She tries her best to make our conversations meaningful and fun - like the time she tried to start a discussion about the "animal" segment of an Elmo's World episode. I personally thought the giraffe was better, but she fought for the elephant. Ugh. More insight later.

By the way, like my awesome post title?

SisterMBear

aDORAble

2008-07-28T14:47:00.000-07:00

In a recent post, I wrote: Hmmmmm....maybe the Dora boogie board her dad bought for her may come in handy after all! It's currently being used as a makeshift wagon / dance platform for MBear.

Just thought I'd add a visual for your viewing pleasure! :)

~ I'd like to thank MBear and her cousin H for keeping the boogie board up while I continued to nag about them "not showing ANY faces to the camera!" (I knew their cuteness would be a distraction from the true subject of the shot!)

photo shoot

2008-07-28T14:06:00.001-07:00

After many grueling hours of hair and makeup, background lighting adjustments, and the pain of choosing the perfect location, it has all come down to this.

Presenting, NBear's biomeds arsenal in all their photogenic glory:

(the newest member to this group is the 200mg of ZEN bottle - Dr. Mielke called these pills "calming amino acids" :) Have they worked? Our answer is yes. NBear hasn't quite achieved her ULTRA ZEN state as of yet, but we'll take it! I wonder if they'll work for me.....

Pictured above is the "needs refrigeration" group. These supermodels were hard to deal with, considering they were extremely picky about superficial details like harsh light, and the amount of time they wanted to spend out of their cool environment. They were definitely a hard bunch to please! (from top: ProbioGold *probiotic capsules*, Glutathione topical cream, and - this was the hardest one to book because of its popularity - B-12 shot.)

Oh, the SAVAGE-ry!

2008-07-27T16:20:00.000-07:00

“Now you want me to tell you my opinion on autism since I’m not talking about autism … a fraud, a racket”

“What do you mean they scream and they’re silent? They don’t have a father around to tell them don’t act like a moron, you’ll get nowhere in life. Stop acting like a putz. Straighten up! Act like a man! Don’t sit there crying and screaming, idiot.’”

Yup, these words were actually muttered and BROADACASTED (is that the correct past tense?)by a man named Michael Savage - not too long ago- on his radio show called “The Savage Nation.”

Naturally, this caused an uproar in the autism world - parents and other advocates (including Holly Robinson Peete and her famous family), who called for his resignation. We even got an email from a very active member of PHP in our community, inviting us to protest in San Francisco today.

Want to know how I feel?
*Bracing myself for a flurry of unhappy comments - or perhaps, flattering myself that I even get that many readers?*
I feel....that he has the right to say whatever the heck he wants to say. Nope, that doesn't mean I don't CARE what he said, or that what he said didn't HURT - because I do (a bit), and it did. But - like all else in life - you pick yourself up and you keep on living. Mr. Savage is obviously not one who deals with autism on a daily basis. He's never experienced an iota of the stress and TRUE pain that our community has to endure - and never mind just the autism community, how about ALL parents who have kids with special needs?

So, with that being said.....why should we even bother? We know our kids, we know we're great parents, we know how our lives are. If he wants to blame parents for something we know we didn't cause, or call our kids names we know they don't deserve - let him. Believe me, I have known worse pain. His rant is not worth my time. Our fight is not with him. We must fight against an entity even bigger than a puny radio message.

*lol* And to those of you who truly do know me, you know the LAST thing I am is a wimp. I have had enough "don't-you-DARE-even-THINK-about-saying-anything-about-my-kid!" moments that I care to remember. (the most memorable moment being when I confrontated that lady in church, I may add)

In closing, I will say this: Mr. Savage is savagely LUCKY that he decided to utter those words behind closed doors, in the safety net of a radio station building.

Had he decided to say that to MY FACE, or to the face of any parent who, unlike him, understands what it is like to have a child with autism, well then...that would be another story. Wouldn't it? *evil smile*

On the other hand, thanks for the wonderful (and free) PR, Mr. Savage.

hello!

2008-07-27T15:16:00.000-07:00

*aaahhh* New look, new post :)
- note: the links on this template aren't as obvious as they were on the last template I used, so feel free to wave your mouse over the light-brown text...(those should work!) Did this? That should take you to something that still tugs at my heart:)

Here we go! Friday was a swim day for both NBear and MBear. A million thanks to LMc and her three darling offspring J,M, and J for inviting us over to the community pool! Both my bears love little J, and can't wait to spend time with her. I was also glad to see the E-V family stop by! (Nice to NOT have any lesson planning books in tow for once, huh guys?)

NBear's love of water has always fascinated me. Most people who work with kids who have autism often find that the BLUE planet ranks high on their interest list. In fact, the school psychologist I work with said something to this effect, after I had mentioned that my NBear loved swimming: "I can't tell you how many kids I've worked with [on the autistic spectrum] that have had an absolute love of water and marine animals!" That was the same year I had "Pete", whom I mainstreamed in my fourth-grade class. Two words to describe him perfectly would be: MARINE EXPERT! Boy, could that kid tell you every little detail about any creature who had inhaled salt water. (He wasn't very interested in fresh water organisms, but can you blame him? Sharks versus bass....yeah. That was tough.)

A friend of mine told me about this surfing therapy they offered for autistic children. Oh my gosh, my NBear would be in heaven. I'd probably have a heart attack on shore while watching her do this because I know FIRSTHAND how hard it is to surf! (Not to mention that being an "island girl" does not necessarily mean you're born with a surfing gene...or the strength to even carry a surfboard!) On my search to look up more info on this topic, I happened upon this other blog. :) - although the last post was back in January :( Hmmmmm....maybe the Dora boogieboard her dad bought for her may come in handy after all! It's currently being used as a makeshift wagon / dance platform for MBear.

What I loved about NBear's afternoon in the pool:

~ interacted with little J - that's a BIG one, trust me!
~ LMc noticed that NBear told her to look at her (NBear's) new bathing suit! *lol*
~ LMc also told me that when D E-V's niece showed up, NBear said "I like your bathing suit, Little Mermaid!" (there was a picture of Ariel on her suit)

...and...*sigh* what I didn't like:

~having to leave early to take her meds before she fell asleep *sob*

~the hard time she gave me when I tried to rinse her off in the showers, and she discovered that the water was cold (and only came in that setting). I felt like a zookeeper trying to get Jumbo the mad elephant to take a shower - didn't know tug-of-war without a rope could last that long! I emerged from the shower room victorious, but my pants were drenched...along with the hair on the left side of my head. Oh, and the slippers that I thought were my beach ones - weren't.

C'est la vie!

there'd be days like this, my mama said...

2008-07-24T22:56:00.000-07:00

(The song sounds so much better SUNG than in mini-lyric form!)

Oh boy. This morning was not a good one for NBear.

Huz and I recently decided - because of the cooling weather, NBear's room is less sauna-like than it had been during the heat wave - that it was time to have her sleep in "The Princess Bed" again. In other words, it was time for her to leave the comfort of mommy and daddy's HUGE bed, and learn how to enjoy the privacy of her own room. We threw in a new twist, though: she would be joined by her unwilling little sister, MBear. (and I mean 'unwilling' in the purest form, guys - this poor kid didn't see it coming until she was unceremoniously placed in her sister's bed, and the night light was switched on. If her thoughts were audible, the entire neighborhood would've heard: "WHAT THE HECK???....WHERE ARE YOU GUYS GOING???")

Needless to say, those two did not have an enjoyable night. Not only did they fight and fidget before actually going to sleep (this was not just limited to slapping, pulling hair, and kicking), but when they did fall asleep, it lasted a mere 3 hours. We awoke (or semi-awoke, on my part) to the relaxing sounds of the doorknob turning, two children crying and whining, and - the most dreadful of all - the sound of the bed squeaking as it adjusted to the weight of the two new bodies crawling under our comforters.

Sucky night = not much sleep = sucky morning = NBear's refusal to get dressed for school = refusal to take meds (she did later, though) and eat breakfast = getting to school late = refusal to get down from the car to go to her classroom ("I'm sick" were her exact words) = Huz's and my patience levels flying out the window. I had a patience level?

But, I must remember that - autistic or not - she is allowed bad days.
We all are.

...and what do we, her wonderful parents, do after we pick her up from school on this BAD day?

Why, we take her to Kaiser for a repeat urinalysis test that Dr. Mielke requested, of course. What grouchy kid wouldn't LOVE to be forced to sit on a toilet so mommy can collect her urine in a cup for the ump-teenth time? Huh? It was not a shock to me at all when - after they called her number - the only one walking up to the lab receptionist was.....ME.

Mommy: *signaling lovingly to NBear* Come here, honey!
NBear: *with a glare that could kill* No, thank youuuuuu!
Mommy: *whispering to avoid any MORE embarrassment* It's just pee-pee, honey. No blood, I promise, ok?
NBear: NO bleeding! No blood!
Mommy: *to the receptionist* I'm uhh...just....going...to get her..ok?
NBear: UH-UH! *shaking head*
Mommy: Come on, honey! I promise, just pee-pee...I promise:)

~alas, her test results came back, and oddly enough, the results were THE SAME as the initial test taken in May. (she showed a high amount of white blood cells in her urine - a sign, Dr. Mielke mentioned, that her body is fighting some sort of infection)

On that note, I must insert a HUGE thanks to NBear's pediatrician for being so willing to run these tests, despite the fact that they were requested by a doctor whose practices do not fall under their umbrella of care. I've heard many horror stories of parents whose pediatricians did not support any DAN! doctor protocols -let alone lab requests, and ended up having to pay for something their insurance companies could have easily covered. (These tests are NOT cheap!) *side note* The tests Dr. Mielke requested were what you would call "normal" tests, and are usually ordered on a regular basis for patients, anyway. She wanted to save us money by having our clinic - instead of hers - perform them:)

Don't get me started on the whole "insurance-won't-cover-this" issue, either.
I prefer to end my days on a good note. :)

~nite.

New friend :)

2008-07-24T06:59:00.000-07:00

*for those of you who don't read my comments*

Carolyn was nice enough to leave this one for me:

Just found your blog through a "someone who knows someone who knows someone else" type link. Sounds like you're a devoted and tough mom ... I'm always inspired by people who make the choice to commit themselves to their children. (Lots of folks talk the talk but don't walk the walk.) Well done! (I'm in the A club too - check out my kid's service dog blog at CharlietheNorthStarDog.blogspot.com)

First of all, I am beyond elated that she found me! Even better is the ingenious way she called our community: The A Club. I can't stop smiling. (for those of who grew up on my island home, wasn't there an "A" Club thing they would have at T-House every quarter? I vaguely remember being able to get discounts for my mom because I did well on a report card...or maybe it was just a bad dream? The T-House items, not the grades. But, I digress...)

Second, I have a feeling LVJ - the aforementioned friendofafriendofafriend - helped out with this "hookup" (right?) I know she once sent me the link to Carolyn's blog and I was crazy enough to not check it out until now. I think it's amazing how children with autism respond to canine companions! NBear loves her cousins' dog Molly - a black, super-active labradoodle. We're still trying to get her to be less afraid of other pooches, but slow and steady really does win the race.
*Don't worry, Kobe - she'll hug you one day too, I know it!*

And last - but definitely not least - I have to be very clear about this: despite the fact that my devotion to NBear's program is evident in my writing, it is not NEARLY as high on the scale as my husband's is. He truly is the stronger one between the both of us. :)

~He is the one who frantically searches websites and joins a million online groups for the sole reason of finding things that will help.
~He does all the shopping and cooking (my friends know why) to make sure we follow Dr. Mielke's dietary advice to the T. Errr...and also to make sure that 1)I don't burn the kitchen down, and 2) I don't feel so bad that I give in to letting NBear have what she's not supposed to!
.........and that's only two items on a long list! (trust me!)

I hope to add more "A" Club members to this blog. :)

I love, I love, I love my calendar girl!

2008-07-22T11:09:00.000-07:00

I had to start writing "B-12" shots with a dark sharpie since Dr. Mielke upped the frequency of her dosage. (It's - obviously - every other day now, which is a good thing!). TheHuz gives them to her while she's still dreaming about her favorite Pixar film.

I had the GRAND idea one day, of trying to have Huz give her the shot while she was still awake, and let's just say, it would have been much easier for us to tackle an American Gladiator.

Order UP!

2008-07-20T15:40:00.000-07:00

FINALLY - this non-cooker has found her

saving grace!

Some of them are even EGG-free! Yessssssss!!!!

other thoughts

2008-07-20T14:42:00.000-07:00

(from the Introduction, pg. xxiii)

You Don't Have to Be Extraordinary

One last thought: You know those mothers in those other autism books, the personal-memoir type? The mothers who are tough and strong and do scientific research on their own and never take a break from working with and fighting for their child?

I'm not like that at all. I am so not a mother tigress. I'm fairly shy, I'd rather go to lunch with my kid than sit in a room and drill him. I'll do anything to avoid confrontation, and I know absolutely nothing about the science of autism except that someone somewhere is trying to locate the genes for it, which would be helpful information, I guess.

I'm totally in awe of the kinds of mothers I've read about in those other books, the ones who knock down doors to get their kids what they need, who contact every expert they hear of, who question authority and read any bit of information they can get their hands on. They deserve their child's success, and I hope every one of them finds it. But I'm not like that, and if it's not your nature either, I don't think you need to be to help your child.

You just have to take the right steps and be willing to do some work.
Start by reading this book.

*as I've mentioned in an earlier post, ABA therapy and other behavioral strategies are wonderful - and vital - in complementing the DAN! program protocol. I'm enjoying this book! Mr. Other Half made the purchase (thank you, AMAZON for your cheap, used books), and I'm happy he did. NBear made her first huge leap when she had ABA time for five hours a week at home, courtesy of her school district;) We have to especially thank MandeeW (BMT = Behavior Management Therapist) for much of the progress NBEar has made. She was truly a god-send, and we miss her terribly! (As NBear puts it, "I wuv Mandee!")

*thanks, LVJ, for showing me how to put images on my posts. whatcha think?

huzandme

2008-07-19T15:15:00.000-07:00

Me: *pouring NBear's precious pee from the "hat" into a huge orange jug* Wow! This is cool!

Him: Ummm, sweetie, you do realize that you're pouring pee into a container and thinking it's the coolest thing....?

Me: I am, huh? *short pause* Wouldn't this make a great post?

*side*
Sorry, readers - I'm home, and obviously have too much time on my hands. Besides, I've been transferring NBear's urine from the hat to the jug for the past 5 hours (well ok - the huz did 2 trips), and feel like one of those Nomadic women you read about in the Bible....."and so the young woman went back to the well......" Who knew this kid had the bladder capability of a mammoth?

Urine luck! (great title, honey!)

2008-07-19T12:19:00.000-07:00

Wow - thanks for your happy thoughts and prayers, guys! NBear took the 3 DMSA tablets without a fight :) Now, I must add that they really didn't smell as sulfuric as I thought they would - I was even brave enough to take a brief whiff of the powder when I opened the capsule.

And ok - maybe the reason she was fine with downing them was because I DROWNED the powder in Cherry flavoring, and the "huz" shot the liquid in her mouth via syringe. The kid didn't even have a chance to blink before we both started chanting: "Swallow it, swallow it, swallow it!", like those white-faced voodoo priests before performing a cleansing rite. It's easy to recognize when a kid hasn't swallowed, anyway - their cheeks are ballooned, they don't breathe properly, and they refuse to take a swig of the "chaser" you've provided for them. (In her case, it was pear juice.) So, the chanting contined until all was well.

Now, we begin the pee portion.

We're supposed to collect her urine for the next 6 hours, right? Step # 1 is to lock the other bathrooms in the house, giving her access to only one. (thereby eliminating any missed samples) Step # 2, is to put a clever medical tool called a "hat" in between the rim and base of the porcelain throne. It is truly a lifesaver when one needs to collect both urine and stool samples. Wanna join the club? :)

....more later. Lunch calls.

Charles Bronson's got nothin'....

2008-07-19T10:02:00.000-07:00

...on these members of the TRUE Dirty Dozen.

Just food for thought.

I love puns.

I'm okay! Really.....I.....am....

2008-07-18T19:24:00.001-07:00

Our minds are so full of information right now, it wouldn't surprise me if brain matter started oozing out of our noses.

Meeting #2 with Dr. Mielke was all about answering our questions (phase 1), going over the lab results (phase 2), and getting the rest of our pharmacy goodies (phase 3) - all in a mere two hours. Needless to say, phase two was my least favorite:

So - she hands us a stack of papers and said they were NBear's lab results. You're kidding, right? - sneered my inner dark self - this REAM looks like the rough draft of the book "War and Peace"! We're going through all of this? Shouldn't you have allotted 6 hours, then? How could 1 stool sample, 1 hair sample, and 3 urine samples have come to this? *side: I must remind myself to post about THAT experience as well! We could all use a hefty laugh.* Alas, all I had the strength to say was, "Oh." Here is what we (hubby and moi) were told, or rather, how we understood what we were told:

*NBear had some serious viral issues - results showed that her digestive tract tissues had some serious inflammation going on

*As for food allergies, our hearts sank when EGG WHITES and YOLK were on her "not-to-eat" list. There go the morning over-easies, the gluten-free cake mixes.....*sob*....also on the list was wheat, rye, cow's milk, and our good friend, gluten. Incidentally, her body's reaction to gluten was so high (she scored a 0.859 on a scale of 0-1!) that Dr. Mielke wondered if the poor child could possibly even suffer from celiac disease. (same link, but look at the 5th paragraph. *lol* Notice the last sentence there? I hope the Pope plans on hiring some people from the "Gluten-Free Eucharist Ministry". Soon.)

*Yes, metal toxins - mercury, lead, arsenic - were still an issue. Chelation was definitely going to have to happen, if we wanted to move forward. I'm not going to lie about my fear of chelation. How can I possibly be 100% FINE when there are things like this and this? OMG. We did receive a test kit - called the Challenge kit - to see if NBear would have a "positive" reaction to the chelator known as DMSA. (I'm assuming that "positive" in this context does not mean happy faces and plus signs, but rather if:

1) she is willing to take the chelator orally, despite the fact that its sulfuric content matches that of a rotten egg...in both smell and taste, I may add. *clearly remembering Dr Mielke's face as she stressed the words "...it...tastes....hooorrrrriiiibbbllleee!"

2) she does not have a bad reaction (a bad reaction to ingesting rotten egg-like powder? Now who ever heard of such a possibility?)

3) it works for her. Alas, some chelators can be picky with the metals they choose to adhere to, and may not secrete them as planned. Let's hope NBear's metals are high on the attractive list .

Would it be so bad to ask all of you who read this to please ask the big G-man (aka J-man, HS-man) to keep her in mind when I administer the test tomorrow? *groan* I'll also have to follow her around for 6 hours after the capsules are taken. Just call me Princess Urine-Collector. *Where's the catheter when I need it?*

***Last Word:
~ Two teary tantrums and one "woe-is-me" speech to hubby later.......and I am fine. really.
Did I also mention that my wallet is now concave? That book idea doesn't sound so bad after all.