Merry Christmas to all...

...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!

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 :)

*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...

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

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!

(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!

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

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

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

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

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

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!

(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!

(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?

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

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

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...

.....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?

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....

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

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!

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....

...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!

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.....

...I thought this was interesting. :)

Side to the Huz:
Whaddaya think, honey?

on hold :(

*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!

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

*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!

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

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!

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

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?

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

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

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...

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?

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

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!