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!