Now I know my ABA...

NBear is currently with R downstairs, doing her ABA Therapy. We are very fortunate to have this program available for her through the school district. (Means it's FREE!) As a public school teacher, I know firsthand that public schools are required BY LAW to provide the best possible services for your child's needs - whether or not your child is part of the Special Education program.

The catch-22 is this: without appropriate funding and resources, the service cannot be adequately provided. In laymen's terms: the law gives you the right to demand services appropriate for your child as written in his or her IEP; however, if what your child deserves is not readily available due to lack of funds, or (worse) lack of experienced staff, you are left with only two choices:

1) leave for greener pastures and/or fork out your own dinero to obtain services

2) play the waiting game (which can mean loss of critical time for your little one!)and hope the school hires the "expert" asap

.....or three (I'm doing this last-minute add!).....hire a lawyer whose specialty rests in getting your child those services!

~ I've been "lucky" enough to have witnessed these three things happen to different parents. Keep in mind, it may not always be for their own good. :(

Our perfect example was when one of NBear's classmate's mom (with me so far?) hired a lawyer to make sure that the teacher in their SDC room had a credential that was specific to teaching children with autism. Well, long story short, the teacher NBear already HAD was so much better than the new one that was hired. We weren't happy the first teacher was going to leave in the first place - even if Mrs.RKW wasn't carrying "THE CREDENTIAL", she had the heart and soul of an angel, and loved those kids enough to make significant progress with them. Needless to say, we didn't feel the same about the new one at all. In fact, I doubt "teacher #2" will be coming back for another year.....where's the love in that?

Truly worth a thousand words!

I sent some friends pics of the girls enjoying themselves in their cousins' pool (NBear is a mermaid incarnate!), and got this very uplifting response:

Re: poolside (from KK)
Cute pics! BTW...you know I notice all the little things so I gotta ask if this was after you began the new things on [NBear]?!?! I noticed she is looking at the camera more. YAY!

Re:Re:poolside (Me)
oh my gosh - i didn't even notice until you wrote. i looked at all the pics again and you're right! who knows?...but yes, it was after we started her on the meds....in fact, she took the 1st b-12 shot that day!

Re:Re:Re:poolside (KK)
That was the first thing I noticed. See...I told you...baby steps!

Generation Rescue - Vaccines

This tidbit is taken directly from generation rescue's website. Note the advice they give about the MMR shots:

1.Take Precaution

•Consider delaying vaccines until your child is 18-24 months old.
•Do not vaccinate if your child is taking antibiotics.
•Consider no more than one vaccine per doctor’s visit.
•If you plan to get the MMR vaccine, ask your doctor to give it in three separate vaccines for measles, mumps and rubella.
•Consider giving high doses of Vitamin C (3,000-5,000 mg per day) on the day before, of, and after vaccination.
•With the measles vaccine (MMR), consider high doses of Vitamin A (5,000 IU or more) on the day before, of, and after vaccination.
•If your child experiences any developmental delays, stop vaccinating until you learn more.
•If your child has an adverse reaction to a vaccine, stop vaccinating until you learn more.
•Always ask to see the vaccine insert, and never accept a vaccine that uses the preservative Thimerosal (mercury). For a complete list of vaccines with Thimerosal, see the FDA’s website here. Note: most flu shots today still contain Thimerosal.

For more of what they suggest (and what I would highly recommend), visit their website.

You're welcome:)

I'm really quite thankful you have informed us of the world of autism. Each year that I teach, I hear more and more and see more and more cases of students with some form of autism. So it's great you are getting the word out and keeping us abreast with [NBear's] condition.

(from SFJM)

the only math I am good at

Genetic predisposition + environmental toxins = AUTISM

Despite the fact that many people say that the true cause of autism is unknown, I believe that in order to join a battle, one has to recognize what they're fighting. Of course, in order to do that in the case of autism, you'd have to choose from several "suspects": drugs, bad mothering, vaccines, eating seafood while pregnant, physical trauma to the child, genetics...etc.

I chose my enemy, and can only pray that I'm fighting the right one.

Yes, I believe vaccines had a part in what happened to NBear. Yes, I believe that she just happened to be one of the 150 whose genetic makeup made her more sensitive to the toxins in our environment. Yes, I wish someone had told me that it was okay to follow a more relaxed vaccination schedule.....but most of all, Yes, I believe there is still a part (hopefully a huge one) of her that can still come back from all of that. That's why we're here.

~nite. tomorrow is B-12 #2 day....remember!

I saw...

...the DVD that K bought about Dr. Kenneth Bock and his biomedical program, which is basically what NBear is on. (see his link to the right --> )

This is a must-see for anyone who is concerned about how it works (that would be our parents, mostly! *hahaha*)

In fact, I still found it helpful!

why nurses are banned from migraines

I still smile about the events that transpired last night. :)

Monster Migraine attacked mommy, so I asked Daddy to play nurse and give NBear her 2nd round of meds and supplements.......oh boy.

Don't get me wrong - he's great at measuring the perfect amounts and finding creative ways to get the kids to take them (like adding activated charcoal to applesauce and calling it "Black applesauce", which NBear loved!)...but, like I said, oh boy. HAHA!

Event #1:

M: *head covered by blanket, fetal position, trying to fight off the pulsating pain in my head* So, you gave her all her meds already, right?

D: *getting comfy on the bed, Jenny McCarthy book in hand, preparing to cover himself in the oh-so-soft comforter* Yes, I did.

M: Did you have a hard time finding the Nu-Thera in the medicine cabinet?

D: *insert pregnant pause here* Oh....shoot....I forgot that. I was just looking at the stuff in the little basket! [I bought a small wicker basket from Michael's for her stuff, but the Nu-Thera needed to be stored "in a cool, dry place", and I didn't feel like a spot near the rice cooker would be appropriate]

M: ...and the diflucan? [also in the medicine cabinet]

D: (no response, but hurries out of his comfy spot - tosses Jenny's book back on the nightstand, runs downstairs, and emerges through the door with water and the Nu-Thera...still in caplet form [I mix the contents in the strawberry-flavored cod liver oil for sanity's sake].
* I can hear him trying to convince her to swallow the caplet to no avail. :) When I woke in the morning, I find - on the bathroom counter - evidence that he succumbed to the inevitable: a small porcelain bowl, and a medicine dropper. :)

Event #2

(background info: NBear's glutathione ointment requires us to put on latex gloves as we apply it on her skin. K had read online that it may also be used for helping out with gout, something he unfortunately suffers from)

Him: You know, I tried putting NBear's glutathione on - without any gloves - yesterday!

Me: You DID?

Him: Yeah, ' cause you know how I read that it can help gout...so I figured, what the heck, right?

Me: Uh - huh? [At this point I'm thinking - Why does HE get to have all the mini-adventures?]

Him: Man, when I put it on her back, my FINGERS STARTED TO GET NUMB! *reenacting (sp?) the event by holding his fingers up to his face*

Me: WHAT? What did you do????

Him: *laughing* I just decided to wash it off! (and something to the effect of "I started freaking out"...but I refuse to use inappropriate language on this blog)

Men.

'nuff said.

I love the way he cracks me up without planning on it.

B-12 day (Was it a bomber?)

6:30 am today:

K gave her the shot while she was sleeping. The needle was small and thin, so I suppose it felt like a bite from a rabid, goliath mosquito. She twitched a bit and then scratched at the spot before heading back to la-la land. *Whew* One down, nine to go - before the next refill.

It took a mere 2 seconds.

Throughout the day, he and I debated about whether or not the conversational pieces she was having with us were a result of the shot. (Many parents whose children have responded well to B-12 *aka MB-12* state that their childrens' speech capability and communication levels increase by as much as double on the days the shots are administered). He would excitedly count the number of words she'd used in a sentence, and I would gently tell him that I had heard her speak that way before the shot was even given.

Long story short, the answer to whether or not we saw progress with the first administering of the shot, is VERY questionable. I'm sure he will say Yeah.....and I will be the resounding Nay. (Is there such a thing as "sorta Nay"? If so, add me to that list.)

The next shot is due in the next three days. We'll be in touch ;)

good deed

Almost forgot!

My good deed yesterday was calling as many new mama (and soon-to-be-mama) friends to tell them about Dr. Sear's book.

I also added in the whole "do not give your kid Tylenol before their shots, opt for motrin instead" quip. (Hubby can probably explain the reason behind that better than I can - it has something to do with glutathione).

I felt like a Hollywood agent trying to book as many celebs as I could to show up at an event: GGC, ETK, JGH, EYS, CFL, RST (or LST :), KCS - and I know there were more, but at the rate I was going, keeping track was not my strongpoint.

Thanks G, for texting back to tell me that you were heading to the bookstore. You won't regret it;) And thanks K (I call her C!) for reading the blog and telling me I should write a book. You flatter me so...;)

poop and circumstance

If you've gotten the chance to check out the TACA Now website, you may have noticed the words "Poop Stories" on their welcoming banner. Yes, poop - like Jenny and Dr. Mielke said, you have to be willing to explore poop when your child has autism.

This of course entails the need to be willing to stand over her or him while they perform the most elementary of all human functions: the bowel movement. Why? Well, as any scientist or zoologist will tell you, animal wastes help one to understand how the digestive tract is working - or not. NEVER in my life did I imagine myself hovering over the loo taking down its color, "sinkability" (sinking poop is best), analyzing/ inferring its texture (because I sure as HECK wasn't about to reach in that toilet water for the sake of unquestionable evidence!) and - here's the best part - looking for yeast. (Do you know how many days I spent looking up "How yeast looks like in poop" on google? Some sites led me to photos and I turned pale as my gastric acids crept up my windpipe). ugh.

My husband and I made a great Laurel and Hardy bathroom team, I tell you:

Him: *yelling from the upstairs bathroom* HEY! She pooped! Come look at this!
Me: *running like a madwoman* Wow - at least it sank and is compact, right? (yes, we learned some crap lingo)
Him: Yes, but do you see the black in it? That's the activated charcoal we gave - great at removing toxins!
Me: Ok, ummm....I'm feeling a bit queasy right now...I trust you.
Him: Really! Look - and that part right there? That's the yeast!
Me: Funny, I thought yeast was supposed to be fuzzy....but umm.....seriously, can we flush it now?
Him: It's gotten so much better though! *smiling* It has!
Me: Yes, honey, it ha...
Him: Where's the camera?
Me: You're kidding.
Him: we HAVE to document this you know? For the journal! It's important!
Me: oh.....kay.....

And so now I'm staring at a single photo in my digital camera, trying my best not to barf. My BEST. For those of you reading, you need not cringe. It will be a cold day in hell when I advertise my baby's poop.

Even for the sake of science. ;)

Rabbits, Vaccines, and Teeth

Nope, the topic of today's post is not "How to avoid rabies". It is simply to state the following:

1. Thanks SO much, R (aka C, or C-la B-la :) for finding the wabbits for us. I will definitely check on it this weekend. They were more reasonably-priced than I thought! I'm still debating whether or not I should take NBear, though....she might want to buy the entire supply.

2. For all my friends who are going to have kids, just HAD kids, or are planning on having kids - I urge you to read this book about vaccines that I also purchased, by Dr. Sears. It does not eliminate any shots, just suggests a new shot schedule. (Which is good because I for one do NOT believe in exposing any child to the possibility of getting a serious disease.)

3. ...and finally.....could my ears be deceiving me? It seems NBear's teeth grinding has lessened. Don't know why, and don't want to get my hopes up too fast, but - when your ears just get so used to the constant sound of enamel against enamel, the sound of silence (though intermittent) is definitely GOLDEN.

~nite.

reactions

Ok, let's cut straight to the chase.

When you put your kid on ANY type of new medication or supplement, you must brace yourself for reactions and just PRAY that they won't all be bad ones.

The very first day we started NBear on diflucan, there was definitely a reaction. Within half an hour of administering it to her, she became unfocused and a bit hyper. (It was pretty similar to how I act after a grande serving of my favorite SBux treat.) Ken found her sitting at our bedroom door at 4am, unable to sleep.

Days 2 and 3 were even worse. We were warned about possible die-off symptoms, (page 34) and that it gets worse before it gets better - but it's nervewracking nonetheless. Autistic children often show regression, a period lovingly called the "healing-regression" phase. :) During this time, NBear's speech became slurred, and she became belligerent in situations she would've otherwise been okay in / with. Her tantrums - though not as bad or as constant as when she was younger - returned. She struggled even more with eye contact, and seemed to have forgotten how to answer simple questions. Echolalia and "TV talk" (much to my dismay) also returned:

Me: NBear, what do you want for your birthday?
NB: Want for your birthday?
Me: What do you want, sweetie?
NB: Nbear's birthday!
Me: Yes, so what do you want for your birthday?
NB: SURPRISE?
Me: I want....
NB: I want.....a....
Me: white.....
NB: White rabbit!

(Before Diflucan:)
Me: What do you want for your birthday?
NB: I want a white rabbit...pleeeeaaaassssseeee?

* By the way, if you have ANY idea where Ken and I can find a floppy-eared or dwarf rabbit before the 29th, DO TELL! :) *

Today is her one-week mark on diflucan. She's gotten better, that's for sure. I'd say she's pretty much back to normal. My normal Nbear:)

Time to go. Her glutathione iontment and supplements call. Twice daily.

...and then, the starting pistol was fired...

My daughter has autism.

She is six - will be seven at the end of this month.

I do not want to start telling her story from the beginning, simply because she is not the same person she was when she was two, or three. The day of her fateful diagnosis, the times she would grunt and throw uncontrollable tantrums, and the devastating moment we realized she had stopped saying words - and would stop saying words for almost a year - are no longer relevant to the story that her life is telling now.

Cured? No - not at all. Far from it. This is not going to be a story of immediate rewards or lightning-speed miracles - though one may hope for them, of course ;) Instead, I hope (like many parents out there) to GIVE hope, and to open more eyes to what you may want to explore if your child has autism. (My newfound mantra is "Leave no stone unturned!")

This all sound familiar? It should. From the depths of my heart I thank Jenny McCarthy for writing "Louder than Words" and sharing her experiences with her son, Evan - and for the many friends who told me about the book's existence. (And to K, who bought it for me...do you realize how precious it is to us now?) See it here.
http://www.talkaboutcuringautism.org/jenny/

In the past few months, we (hubby and I) have done the following:
* visited Dr. Mielke - a DAN! doctor in Pleasanton

* watched NBear get blood drawn both at that lab and at Kaiser
* collected urine, hair, and the ever-favorite stool sample for her biomedical testing
* started her on an anti-fungal called Fluconazole (Diflucan)
* began her biomedical treatment with an arsenal of supplements, which include: Probiotics, Cod liver oil, Nu- Thera, (she's not on the SUPER Nu-Thera, as the link shows), Trace minerals, Magnesium powder, and Calcium powder. The last of which will be the infamous B-12 shots, which we'll have to administer pretty much like an epi-pen.

* started a journal to note any reactions or changes NBear experiences during her treatment

* said goodbye to a lot of our savings.....without caring ;)

......SIGH.....

My energy is drained right now. Time is 11:43 pm. I promise to continue as soon as I can.

The important thing for everyone to know right now is that we've awakened to the sound of the starting pistol.

Our marathon has begun.