Make that a statistically significant increase in a WHOLE WEEK's worth of verbals....

Another record high day of verbals today.

And for clarity - this is what I mean.  I took the numbers that the therapists give me each day (so rough data, and this is spontaneous manding and tacting ONLY), and averaged the first 3 weeks of September - Dominic was averaging per 3 hour interval 65 mands and 82 tacts.

Taking the numbers from this week only, and he averaged over the same 3 hour window 132 mands and 146 tacts.


I added back to his supplement routine this morning Travacor, Jr, to try to even out some of these behaviors, and today was a good day. I think we'll leave it there for a week and see what happens.

oooh. 2 very chatty days. in a ROW

Review for everyone, since I know I have some new readers.  Alpine takes data on Dominic for the 3 hour window that he's there every afternoon.  Data on speech (manding and tacting which is requesting and labelling respecively), behavior, stim's, toileting, etc etc.   And they make me pretty charts once a month, and i agonize over data and look for trending we can correspond to supplement changes, sunspots, etc.   This is awesome because its concrete, and it means positive changes are actually documented not subjective.  Ditto for the bad days.

So.. July was an awesome month verbally:  Dominic averaged ~110 each of mands and tacts per 3 hour session.   That was the chattiest Month Domini has ever had.  August we saw a big crash, which Alpine attributed to a combination of new building for them, new therapist on his team, and the transition back to half days at the public school which has much lower requirements of him.   We know that at home we were also dealing with a massive yeast flare and started the whole Antifungal route on top of gut healing.   In August, Dominic averaged 85 mands and 82 tacts per session.  So statistically significant in the drop.

I get a note every day on what that days verbals were so i can track immediate issues, and until yesterday, September was on par with August, and boy were we frustrated.

Side trip down supplement lane:
So the Unique healing protocol is the only thing we've been messing with at home.  Remember we did the massive dose Antifungal for 10 days, got Dominic's stool frequency down to 2x/day?  Then did 5 days at 2/3 the big dose, and stayed at 2x a day?  So last Thursday we dropped to 1/3 the massive dose.  Friday he had 2 poops.  (and tried to set the place on fire).   Saturday, behaviors were OUT of control, and he pooped 5 times.  So i followed Donna's directions and Saturday night we were back up to the full massive dose of antifungals again.  Sunday poop was back to 2x and has stayed there.    Monday i reached out for a consult with Donna and she confirmed my inclination to go back to the high dose, recommended we stay there as long as we could financially, and then only drop to 2/3 that level.  

Tuesday at Alpine, Dominic's verbals were OFF the charts high:  Mands were 118 and Tacts were 172.
Today, Dominic's verbals were off the charts,again:  Mands were 193 (record!) and Tacts were 149.

we could be seeing a very good trend.  It probably has at least something to do with getting yeast under control.  And they've got a  new therapist shadowing his team right now, a guy this time who apparently Dominic loves - so many of those mands have been to engage him in play.   Whether he will end up working with Dominic regularly who knows.

Funny moment du jour:
During circle time, they read a book.  Dominic's lead therapist was saying something to him, and turned around and said " Brooke, SHHHHHH"  complete with finger over his lips.  and apparently the entire staff had to struggle not to laugh hysterically.  She said "Thank you for telling me Dominic".

Well. that was Not a Pleasant evening.

For a long time we've known that Dominic had a fixation on flames, and did not leave pans on the gas stove unattended unless we had to, you know, make a bathroom run, answer the phone, answer the door, etc etc.  Life happens.  I've also found evidence of him ripping leaves off the spider plant and putting them into the flames to watch them burn (evidence being burned bits of leaves on my stovetop).  So we do our BEST to not leave the kitchen unattended.  

Last night, i had just put my fresh spaghetti sauce (good use of garden tomatoes) in the pot and set it on low and ran to the bathroom before i needed to start boiling water.   When i came out, no less than 4 minutes later, i saw Dominic trying to shove a flaming toy snake into his toy chest (a lifesize, plastic extremely flammable toy snake).Grabbed the snake, threw it in the sink.  Removed flaming plastic bits from stove.  Fire out.    He burned himself a little tiny bit (3 burns, none larger than half the size of my pinkie fingernail) - and not badly. I've done much worse to myself cooking.  You would've thought the world was ending from the drama that ensued

He is apparently what other ASD parents refer to as a first aid refuser.  I could NOT get him to put either his thumb or his forearm into water.  The best I could do for immediate first aid was to get him to press a vinegar soaked paper towel onto the worst of the burns (inside his forearm) which he clutched to his torso the remainder of the evening. Before he went to bed I did manage to get a nice layer of calendula gel onto the burns, and this morning there is no redness left, and the tiny spots that had blistered are well on their way to healing.  So he's fine.

BUT

He could've been seriously injured.  he could've burned the house down.  It could've been AWFUL.

My first inclination is that the gas stove has to go and we need to buy one with an electric range.   I did some googling and we couldn't pull that off (with delivery, install and haul away old gas stove... plus capping off the gas, etc) for under $1000.   We just can't do that right now, not with me probably having sinus surgery next month (and not having reached my deductible yet).  Which means I'm going to be turning off entirely anything on the stove if I have to leave the kitchen for any reason while Dominic is awake.  Fun times.  If anyone wants to know what I want for my birthday in a few weeks, it'd be an electric range (ha, i know)

edited to add // with much research I've decided what i REALLY want is an Electric Induction stove - the kind that works off of a magnet so the top doesn't even get hot to touch..  Of course, being new technology, these are currently stupid expensive, BUT its going to the top of our tax refund list.;..

wow. just wow.

I happened upon Lisa Ackerman's blog today (Lisa is one of the original Autism Warrior Moms who has pulled the BioMed community together with TACA).  By the way, go read that Mother Warriors book. It changed my life in ways I only recognize now in hindsight - knowing the parents who had fought this fight already gave me all kinds of strength.  I still go back and re read it periodically.  And cry.  Its a crying book.

And a few weeks ago she posted this old story, that i'd never heard. And I have no idea who to credit for it. But it completely and absolutely explains why it is we do what we do.  And how hard it is to get those around us to accept that its simply what we have to do, forbidden by mainstream or not.  

Two tribes lived side by side.  They were separated by a mountain and a valley.  The two tribes deeply believed in the spirits protecting their tribes and believed they were forbidden to cross the imaginary lines separating their tribes.  

Because of their fear of the spirits in charge, valley tribe members never went up the mountain and mountain tribe members never walked to the valley.  To violate this rule was unthinkable.

One night, a valley tribe baby escaped from the safety of his tent and crawled up the mountain.  The valley tribe members were distraught and frantic looking for the child.  They scoured the valley for the lost child but it never occurred to them to venture up the mountain in their search.  They could not cross the forbidden line.

Giving up, the valley tribe members began to commiserate the loss of the child. The baby’s mother however, walked past the wailing tribe, climbed up the mountain, and recovered her child.
On the way back to the village a tribe member asked the mother “Your baby was gone forever and you brought him back!!  How were you brave enough to go search the mountains when you know it is forbidden?  I could never do that!”

The mother simply replied “It wasn’t your baby.”

Update on our Unique Healing journey (by request)

We just finished 10 days of super high dose antifungal, and  as Donna promised, it has reduced the frequency of Dominic's bowels from 3x per day to 1-2x per day.   Here's a review of why we want to reduce the frequency, aside from the whole yeast problem.

We'll be doing 2/3  of that dose of antifungal for 5 days, and then 1/3 for 8 weeks.

So far, everything that Donna promised her protocol would do, it has. 

- diarrhea stopped when we removed fruit juice

- the bentonite has firmed up Dominic's stools dramatically, made the color more uniform, and made them smooth, not bumpy looking.  (i have IBS and I have to tell you i've now had 3 episodes of IBS where i grabbed the bentonite in agony and it stopped everything cold, including cramping.  the stuff is magic.)

- The colloidal silver (our antifungal of choice) has reduced the frequency of Dominic's poops as she said it would.  The yeastie giggles are gone too.

- The mB12 increased his speech by 10% in the first month (mind you we were already on injections).

So, it stands to reason that her protocol will continue to do what she says it will do.  And she says with time, probably 18-24 months -maybe longer, but there is definately an end in sight, on the Bowel Strength product (which changes the pH of the bowel and facilitates healing of the gut organisms),will heal Dominic's bowels.

She says that we'll be able to back off the mB12 in 6ish months and reduce dosage because those pesky organisms will be producing it on their own again.

She says that by this time next summer, it will be MUCH easier to get control of a yeast infection if he gets one (we're doing big guns right now on yeast)

To find someone who
1. actually is willing to say that their product will heal my kid
2.  actually isn't lying about #1
3. Is more geared towards educating us on how to manage symptomes (eg, he had some cantalope, got some diarrhea, i gave him extra bentonite to absorb the acids, it went away), that make us depenent on her.3
4.  has a fricking END date on treatment instead of a keep adding supplements which you will give for the rest of time mentality

is AMAZING

'course, she's not technically in the ASD community, but i wouldn't be surprised to see people flocking to her as this gets out.   Her theories are admittedly out there, but i would encourage ANYONE with any sort of gut or neuropsych issue to read her book and see if it resonates with you.  She also swears it helps autoimmune disease (how she stumbled upon it), weight issues, addiction.   After trying just the bentonite, i believe her.

I *know* I should never leave the kitchen while cooking.....

So I have no idea why i did today.

In the steps between the completion of batter for 4 loaves of zucchini bread and putting them in the oven (oven was still heating, in my defense).  I sat down to answer a few emails.  Checked facebook.  Did some quick catching up with an old friend.   Couldn't have been sitting down more than 5 minutes.

realized I couldn't hear Dominic.

thats never good.

Went to the kitchen.  Zucchini Bread Batter EVERYWHERE (there was oddly enough still plenty for 4 loaves, but they are a bit short.   From the top of the stairs, I see him downstairs stripping. Follow the path of zucchini bread batter to the upstairs bathroom, where it is ALL OVER the sink.  Thru the kitchen, where its smeared w/the dish cloth and a couple of towels ALL over the counter/stove front.  Down the stairs.  On the walls / carpet / DOG.  In his room. In the downstairs bathroom, smeared all over the sink.

Got him changed, and left him in his room until i could get the place clean. 

On the plus side, he did try to clean it up.
And he did look me in the eye the ENTIRE time I made him repeat, one word at a time "I am sorry for making a mess"

(we're not going to talk about the whole ingesting gluten part of this)

We Did it!

THANK YOU, THANK YOU, THANK YOU!!!!

We did it.  As of Thursday night when we closed the Give Forward Fundraiser, between that fundraiser, the epic yard sale, offline contributions directly to Alpine by folks who were doing tax write offs for us, and a particular Coporation (who shall remain unnamed)'s Matching fund for one of those folks...  we raised in one month $4776.  Our goal was $4600.

AND we still have some big stuff we're working on selling (FoosBall Table, Electric lifting chair for someone w/difficulty getting out of furniture, and 2 really nice guitars of Rod's), so more will be coming in.

To say that we are completely humbled and feeling tremendously supported is beyond an understatement.   We have been putting every penny we can into his therapy account for years now, and we made the rule that it didn't get touched for anything but Dominic's therapy.  When we had to raid it to pay for the car repair last month it completely knocked the legs out from under me because so many other things could go wrong, and we need to be able to keep our heads above water.  That was one of the drivers in setting an end time to the therapy of Aug 2012.  (the second driver is the loss of insurance coverage for anything relating to a diagnosis of autism the day Dominic turns 7 - Feb 11.  Insurance had been covering ~25% of the therapy for the last couple of years)

When we started this fundraiser, I picked the amount of $4600 very specifically.  When we put the finish line (Aug of 2012) in play, we sat down and looked at the therapy account.  We took what we would need to get to the finish line, subtracted what we had, subtracted what we're pretty sure I'll get in my bonus in Feb, and what we think we can squeeze out of a tax refund.  Divided what was left by the number of paychecks between now and when the last payment would be due.  And took a really deep breath.  That $4600 is what it was going to take to put that per paycheck amount from "uhoh, i don't think we can pull that off" to "okay, we can do this with just a bit of juggling and appropriate choices". 

So the difference all of you have made is phenomenal, and we hope that blessings and good karma rain down 10fold for you.  Its been an amazing lesson in a number of things, from the generosity of community to the need to ask for help.   And while i don't particularly ever want to do it again, We are completely gobsmacked at how it turned out. 

We will pay forward as much and as soon as we can.

playing dress up while i sort left over clothes...

Yardsale Day! Pictures

I know it looks all thrown together... but really, its organized.

Everything is sorted, priced, and labelled. And ready to be schlepped to the driveway at 7am tomorrow. YArdsale starts at 8. Whew.


Garage facing out:

Garage from the kitchen door

Living room, Rocker and computer and tray table are NOT going out.  most everything else is

As much of an aerial view as i could get.

~~~~~~~~~~~~

We continue to fight the yeast beast in Dominic's gut.  I had another appointment with Donna, and we're going to be very aggressive since I still hadn't been able to get him having fewer than 2 bm's per day.   Massive antifungals for 10 days, and if at the end of that time he's not going one time or less per day, then we'll probably increase the dose (for reference, we're already at the high end of what she gives adults).  If all is good, we will go down to 2/3 of that dose for 5 days, and then if still good, we'll go down to 1/3 of that dose for 8 weeks.   If at any time he has a second BM during the day, we will immediately go back up to the full dose for a few days.

She promises me this will clear out the yeast and his behavior/speech will improve.  Last night was the first night at the high dose, and today his Alpine therapists told me a couple of interesting things

1.  He had foul gas.  I'm guessing its die off related, which makes sense

2.  He was exceptionally chatty and engaged, even tho compliance and focus were not the best.  Some examples:  one of his reinforcers is for the therapist to give him a very animated "YAY", and at one point during the day he actually said "I Want YAY".   He's been working on social ID questions, and the current one is When is your birthday.  His therapist actually got "February 11" out of him, with the /f/ sound, which is ASTONISHING.

~~~~~~~~~~~~~~~~~

Hey, LOOK.  Isn't this what I've been saying was Dominic's issue from the get-go.  Wakefield was NOT a crackpot.

An update on our fundraising efforts. AKA, we love our community!

  We are at a little over $1200 raised in the online fundraiser and a little over $1400 raised offline from folks who wanted to be able to take a tax write off with a directed donation to Alpine.

Our goal is $4600.

So, we’re having a HUGE yardsale this Saturday.  We put the word out, and all kinds of things have been showing up.  A good portion is things from our own home we either aren’t using or are sacrificing because Dominic needs the therapy more than  we need the item, but there’s a ton of stuff that folks have given us (and new stuff arrives every day)

Its been a tremendous lesson for us in community, and in the support we have from our circles of friends.  So huge huge THANK YOU’s to everyone who has pitched in to the various parts of our fundraising efforts. 

Its also been kind of a hard pill to swallow to  realize how tightly we’re budgeted  and to wonder why some in our lives who seem to have excess are unable to find a few dollars or things to put towards Dominic’s therapy.  And that’s where we have to take a deep breath and offer more gratitude to those who have.  Because you don’t have to.   Dominic’s not entitled to your help – its our job to try to find the way to do this, not yours.   So we remain incredibly grateful for the support.

The difference its going to make is HUGE and hard to communicate, but let me put it this way.  The amount we’ve raised so far means that for the next 10 months, we only have to set aside 75% of what we would have had to otherwise.  That’s our utility bill. Or our grocery bill.  Its significant.  We’re hoping to raise a significant amount more on Saturday.

Here’re the things we have so far accumulated for this sale, and more is coming!

~  DVD’s & WII games

~ Children’s Clothing:  $1 a piece or 6 pieces for $5 (Sizes newborn thru 8  both boys and Girls. Includes party dresses, School uniforms, shoes)

~ Adult Clothing:  $2 a piece or 3 pieces for $5 Womens clothes sizes XS-XL, some Maternity

~ Massage Table

~ Large kids toys, High Chairs, Easel/Chalkboard

~ Misc Kitchen and household items

~ InStep 2 child Bike Trailer

~ Electric Acoustic Guitar, travel case

~ Electric Guitar, travel case, cables, amp

~ Electric lift chair for the disabled - $500 ($1200 new)

~ Boxes of Wooden Thomas the Train Track stuff

~ Large Furniture: Matching Coffee and End tables, sofa, desk, dresser

~ New in Package: Pfaltzgraf Dinner Ware set, serving stuff

~ Working lawnmower

~KnickNacks and Framed Art

We’ve also got some fun stuff.  Baby Cotton Bottoms is offering customers 10% 20% of what they spend on Saturday in store credit at BCB.  Joan over at Health and Wisdom is giving 20% off a magnesium or mica purchase to everyone who buys something at the sale.   And we’ve got 2 beautifully handmade baby blankets that we’re going to do a drawing for (cash donation of any amount = a drawing entry.  Also every $25 spent on the yardsale = a drawing entry). 

I’ve got a babysitter lined up for Dominic, and a handful of friends who will be extra hands over the course of the day, and we’re going to go for it!

My to do list: 

Solicit donations:  Check

Sort and price:  Everything we’ve gotten so far is done, more being done as it comes in

Advertise:  Craigslist, check. Thrifty Nickel, Check. Signs for the street, Check.  Facebook and email, Check.

Diagram layout of sale: check

Make posters: pending

Put up signs down the street:  Will do Friday

No, no, I am not obsessive compulsive. It’s the project manager in me. ;).  I LIKE LISTS!