The See Saw, part 2.

On Tuesday we had our last consult with Dominic’s SPED teacher this year.  She’s done a great job with him and we’re sad she’s going to a different school next year.

We talked about his ABBLS test, and she’s got big concerns for the gaps in his scoring.  The ABBLS test measures the things that he’s learned to do.  The results sheet is little squares, each representing a mastered skill in a category that get filled in as he masters it.   There’re basic building blocks that he’s just not “getting”.  She’s engaged the district’s ABBLS trainer for guidance and that trainer is also very concerned about the gaps.  We have a list at home of the specific tasks he needs to master and really no idea how to teach them to him.  We would love input from our teacher-y and therapy-y friends who read this blog..

We have now an 2 inch thick packet of worksheets for Dominic to work on this summer that include a numbers program (tap math for those teachers who read here), tracing, things to practice coloring within the lines (seriously, that’s a mastery skill he has to master), 3 books from his reading program (yes, the one I was so excited about last year, he’s only mastered the 2nd book, the third they were sending home just for exposure), and some other things.  The kid will be at the Y day camp for 8 hours and come home to do homework (presuming we push it. If the school really thought he needed to work during the summer, they would’ve given him ESY). 

Further, we got the news that next year’s SPED has not yet trained on the ABBLS AND there’s a chance if enrollment shifts down that Dominic would lose his 1 on 1 para that does SO well with him (she’s the last hired, so would be the first let go if they had to).  She is the only ABBLS trained para at this school and Dominic LOVES her.   They also didn’t do the staff training they committed to us they’d do in April. 

If Dominic had not already formed good connections with students at this school, we would be currently pursuing moving him to the school that this year’s amazing SPED is going.  We may still.   I did send an email to the principal last night documenting our concerns and setting up a potential escalation, should their commitments to us not be fulfilled over the summer and she responded that they’re trying to figure out how to get the training done over the summer.   Regardless, what a headache.   We want Dominic to be successful and this is the appropriate way to educate him.  And they have the district resources to train their staff, they just have not taken advantage of them.

We left that meeting very disheartened. 

The SeeSaw, part 1

Its been a bit of a nutty week emotionally for us and I have just now had a few minutes to sit down and write about it.  I suspect this will be a multi part blog entry, starting with the up so come back tomorrow to see part 2.

There’s a tool called the Autism Treatement Evaluation checklist that we have used off and on with Dominic for the last 5 years to get a feeling of how treatments are going.  Its been quarterly the last year as a requirement for being part of a group of parents doing the  Rivera Protocol (Chlorine dioxide)  and taking data on it.   The survey is here if you want to go look at the questions, but in general, there’s a section on speech, a  section on social activation, a section on sensory and awareness, and section on physical health and behaviors.  
The higher the number, the more impacted the child is.  

The first ATEC score I did on Dominic was in July of 2009, when we were in the midst of the first horrible chelation attempt and he scored 93.  It was awful. That was the worst score he’s ever had and was just awful.

Since then his ATEC has bounced around, overall edging down.  We did have some time in 2011 when we got down really low (11) to bounce back up into the 30’s with the Biofilm protocol that made him so sick and then again in 2012 we got him down to a 12 and then springtime allergies bounced him back up to the 20’s.  Anyway.. When we started CD last summer we were at a 19.   We were down to a 13 in January then back up to 23 in March, and back to 13 in April (spring allergies hit him hard).

I should mention, that for the purposes of the data we keep for CD, Kerri considers an ATEC score of 10 or under to be recovered – to have lost the formal Autism Diagnosis.  There will still be other stuff but that score in general that means a recovery to this protocol.

So last Friday, I did an ATEC on a whim.  It was 11.   then we had a REALLY good weekend, with no SIB’s, way fewer stims,  lots of talking (even a couple of spontaneous 4 word sentences) lots of spontaneous labeling with words we didn’t know he knew.  So I redid it Monday and came in at 10 on the nose.  This made Dominic Kerri’s 91’st recovered child.

Now, 9 of those remaining points are in Speech and this is where he struggles SO hard, so we have a lot of work to do.

Also, as I told Kerri, he’s bounced before and I wouldn’t be shocked if he bounced again and slipped back.  She is firmly rooting for him, tho, and thinks we’re onto something with our current regime.
So while I’m not breaking out the party hats just yet (I’ll wait for the score to hold here for a while and drop some more – we want to get to a 0), it’s a cool milestone, and I’m thrilled we got here.

Aromatherapy

And now for a brief change in subject..

 Years ago when I went to the T-Tapp retreat in Florida, I came home with a sample of Muscle Mist, by www.aromasensations.com

 

I was shocked that not only did it loosen up my back enough for me to put it back into alignment myself, it also got rid of my tension headaches when I sprayed it on my neck.   It got rid of my pain enough for me to get to sleep.

They have a bunch of other cool stuff too, most of which I have not tried.  But if its anything like the muscle mist, it would be very effective.   They do offer guarantees on their aromatherapy oils for snoring & migraines.

I have been a faithful customer of theirs for years, so I was excited when I went to order recently and discovered I could host an eparty and get my friends free muscle mist.

So, here’s now it works.

My eparty is for Monday and Tuesday, May 13^th and 14^th.

On those two days only, if you put an order in and put my name in remarks and eparty code in the comments you get a free Muscle mist (2oz) if you spend $29.  You get free shipping as well if you spend $50.

If you call in and leave a message on those days, give them the same informaiton and you'll get the same goodies.

 

Name: Joy Whitcomb
eParty Code: 1367334524

 

History

Probably not very many of you know that I like history and was actually in fact a history major in college.  So I was completely over the moon to read these two articles about finding one of the original “first” children ever to have autism.

here

and

Here

Kanner had originally theorized that it was refrigerator parents who caused Autism but this research shows that (at least this original first child with autism) had 3 possible exposures to mercury:  “the first use of mercury-preserved vaccines in Baltimore -- a drive to vaccinate every infant with those shots began the month she was born;  her parents' avocation of orchid growing and breeding, which required intensive application of chemicals including mercury;  and her father’s psychiatric career, which brought him – and probably his family through second-hand exposure – in contact with mercury treatments for a common form of insanity.”


Read the whole articles. Its both very cool to see the history, and very horrifying to get this additional validation that  Autism is a man made epidemic.    We have done it to ourselves as a society and as a society it is our job to stop doing it.

oh yes I did.

While we have come a long way from actual willpower fights over Dominic eating non preferred food, there are definately things we ask him to eat that he really doesn't want to. 

This past weekend, I roasted off beets.  They're nowhere near his list of preferred foods, but I told him he had to eat all of them before he could have seconds on rice.  And then I left the room briefly.  I came back and his plate was clean.

Too clean.

I checked the trash, and there they were sitting RIGHT on top of a clean styrofoam to go box. (germaphobes, don't freak out, this is one of those willpower things. If I hadn't proceeded as per below he'd think he could just throw away what he didn't like.  we don't want to start that precedent)

I looked at him and in my best stern voice said "WHAT did you do??".  He ran over to the trash can and started scooping them out and into his mouth with a really guilty look on his face.  He KNEW he wasn't supposed to do it, but tried to slide one by me.  And he knew he was Busted.


Its kind of fun to watch a mischievous little boy start to emerge.

So we got interviewed...

My friend who is a PhD NeuroScientist teaching at  Colorado College contacted me last week and asked if I'd be willing to speak to a group of college students taking a family psychology class about what its like to be a family dealing with autism.

I only had to think about it for half a second. It really is time for me to do more advocacy work, and talking to the young adults who will eventually be in positions of making policy around DSM6 is kind of important.

So they came over Monday night.  We purposefully scheduled it so Dominic would be in the thick of things and boy was he ever.  He was super silly, flirty with the female student, and very interested in the camera that the male student was using to video us (their project is a video project).  He spent a lot of time crawling under the tripod, sticking his tongue out at the camera and taking pictures of his fingers.  Their video is going to be interesting.   He has developed a new stim that we hate.  He runs around saying "spank you spank you" and slapping his butt.  This is courtesy of my mother in law who teases him by saying she's going to "spank you" and then laughing and tickling him.  Its proving to be difficult to break.  and of course, he did it constantly last night

They asked good questions.   We talked about the financial and emotional tolls on our family.  We talked about how isolating the diagnosis had been, that our social life is almost non existent and the reasons why.  They wanted to know where we'd found resources.  I said The Internet.   They were a little taken aback.   I also said that Alpine Autism Center locally had been very helpful, and that led to a discussion about how we stayed until we ran out of money. Then we talked about how I'd learned to stretch a dollar until it begged for mercy and how we'd had to let things in the house slide and were just trying to dig ourselves out.  We talked about how hard it had been for (local) family to adapt their thinking so that Dominic (and therefore us) could be included in family meals.  The example of my motherinlaw making him chicken, but stuffing it with bread, and then being offended when in wouldn't let him eat any.

They asked how it had changed us.  We told them that it made our marriage much stronger - that the little crap that bugs people just doesn't matter anymore because we have much larger things to worry about.   We told them about how it completely changed our parenting styles... how we went from the traditional "NO" to redirection actions, and showed them how much better it worked.  (and it did, Dominic redirected beautifully to a "hey come sit down" where ignored my "leave the camera alone" statement).  We told them about how we had patience now we never had any idea we could manage to have, especiallly with little stuff.

We talked a lot about how Autism is Medical, pathogenic really, and that when we started treating those underlying pathogens, we started making good progress and that we're so much further along now than we were even a year ago.

They asked what we hoped for Dominic long term.  And we told him that we just want a functional, independent human being.  We don't really care about a college degree, we want him to be able to have a job, and take care of himself as an adult.  I told them about the parents in the community who were starting to have to have their adult children legally declared children... stripping them of the rights of adulthood because of their disability.   We talked about the flood thats coming of autistic adults who age out of the school system and how our communities simply aren't ready.  1 in 50.   So in a small town, with a population of 20000, for example, that means in 2 decades, if we don't heal these kids, there would be 400 completely disabled adults who will have to be taken care of.  Thats probably  50 group homes.  I can tell you that kind of infrastructure just isn't there.

When they left, Dominic gave the guy a hug.  After all, he shared his camera.

And yes, I wore my Thinking Moms Revolution shirt.  They said they'd send me a copy of the interview video (which will just be for their class), so I may post it.

I didn't spend any time on the specific things that have worked for Dominic, but I did allude to our expensive years of DAN and that we are working now with our familly prac and doing things that are completely NOT FDA approved.  But I didn't give details. Wasn't appropriate for the setting.

There's a horse in his bed

We had our semi-annual pipes back up and flood the basement drama yesterday - worse than usual because neither of us was around to hear the flooding, so it was a pretty bad flood.  Fortunately we now have friends with a drain snake who will come over and snake our drains for us without us needing to call a plumber - we are very blessed.

Anyway, as result, Dominic's closet floor needs to dry out so everything that was stored in there is now out in his room. One of those things is the YEARS old rocking horse that he has loved and loved and loved and outgrown.  When he saw it out in his room, he got on had rode it for a while.  And I couldn't get him to get off it and get into bed without it being tucked in too.

This meant that Mr Bear had to sleep on the bookshelf last night.  Dominic gave Mr Bear a hug and kiss and then snuggled in with his horse.

Trip to the Zoo May 2013

On Saturday morning, Dominic woke up and said "Zoo???".  I told him we could go to the zoo on Sunday if we got all the housework done on Saturday and the proceeded to hustle through the housework.   So he and i went to the zoo this morning.  :)

He actually did the best at the zoo I've ever seen. he told ME what animals he wanted to see and in what order.  And he took me by the hand and led me thru.  Very cool.  Chatty throughout, but mostly single words.   We got to go in the new elephant/rhino barn and he was very excited about the rhino.

Here're some pictures

First up, the traditional feed the giraffes experience. I have learned tho, that its dumb to spend $2 on 5 pieces of lettcue when you can bring a WHOLE bag of lettuce from home for almost nothing.

Then we moved on to his new favorite area, the redone Elephant pavilion.  Where he totally hammed it up sitting on the elephants trunk:

The peacocks at the zoo wander around free... and have NEVER let Dominic get close enough to touch.  He managed today (and... left all the peacocks feathers intact)

This floored me. The shuttle driver waved at Dominic and he independently waved back, while sitting on a mountain goat sculpture.

Waving was a common theme.  Unfortunately the gorilla couldn't have cared less about being waved at or reciprocating.

Blurry picture, but... his tongue is in his mouth  AND he's grinning.

Failed to get my face in this one, but here is a hippo imitation.  Actually, a Hippo-Pie imitation. (i say hippopatamus, he says hippo pie.  go figure)

He really needs a pony.
(not)

And he managed to get off of this one all by himself.  Helpful antlers.

The *bleeding* edge

The protocols we have been doing with Dominic since regression have all been cutting edge, but of late, we've been closer to the bleeding edge.  CD (Clorine Dioxide / MMS) specifically is bleeding edge.  Even within the Autism Biomed community, where parents will try anything to fix their kids, there are ugly fights about it with a large portion of the community convinced its child abuse.  Ironically, it was those fights a year ago, after Kerri Rivera's first presentation at Autism 1, that introduced me to it. I figured anything that generated THAT much controversy probably had something going for it.  And here we are a year later and a LOT closer to recovering Dominic.

I was really impressed to see the study coordinated by Andreas Kalcker (who I get to meet in a few weeks at Autism 1, which will be really cool) and actually executed by the Red Cross in Africa, where they used MMS drops (a single dose even) and CURED malaria in 24 hours.  The results are at 9:20.  154 malaria cases documented with blood and microscope tests.  143 cured (negative tests) in 24 hours after 1 dose of MMS (Chlorine Dioxide).  Of the remaining 11, it was determined that they hadn't taken their full dose and were given a second dose.  All of those remaining 11 were cured 24 hours after the second dose.

Here's the video.  Fair warning the last 5 minutes or so are very propaganda-y, but the information on the study done was really interesting

Malaria is a parasitic infection.

Seriously, its going to take an Act of Congress?

When I talk to people about vaccines, unless they’re on the front lines and deeply in the battle like we are, they are generally fairly aghast when I tell them that there has never been a study done comparing rates of autism in vaccinated vs. unvaccinated children.   For my feelings on vaccines, hop over here.

Nope, there has never been one.  The CDC says it would be unethical.  I call BS.  There’re whole enclaves of completely unvaccinated children in homeshool groups, in Amish communities, etc.  There’s no reason that the data cannot be gathered. I think the CDC and NIH are afraid of what they’ll find. We all know that correlation doesn’t equal causation. And I personally know several unvaccinated children who have autism. But they have clear, major, family autoimmune disease history.  This is another big factor.

Last week, Rep. Posey from Florida presented legislature to require the CDC to do the vaxed vs. nonvaxed autism study.   I fully intend to shake this man’s hand and thank him personally because he’s going to be attending Autism 1 in a few short weeks.


From his statement to Congress on Friday:

On December 19, 2006, the effort to address this epidemic took a major step forward as President Bush signed into law the bipartisan Combating Autism Act. I look forward to working with my colleagues and the Autism community to reauthorize this program next year. Though the Interagency Autism Coordinating Committee each year produces a strategic plan to address Autism, the billion-dollar allocation of resources to autism has not been evenly invested among genetic, epigenetic, and environmental factors. I must concur with the experts who have been willing to speak out, that the epidemic increase in the rates of autism are not a 'genetic' epidemic. Indeed, you don't have genetic epidemics. While there is likely a genetic component to many who have been diagnosed with Autism, we must seriously consider that there are likely several key factors in autism.  Also, so some who have suggested that the increase in Autism is due to better diagnosis, you don't go from 1 in 1,000 to 1 in 80 in three decades due to better diagnosis alone. And, if that were the case, where are the tens of thousands of autistic adults in their 40s, 50s and 60s. While better diagnosis may be a factor, common sense says there is a real increase and something is causing it.  While some may be borne with Autism, there are many parents who testify to the fact and present cases where their children were
progressing normally but something triggered a regression where they lost speech, abilities, and regressed from developmental milestones that they had earlier met. Was that regression due to external factors sich as medical injury, exposure to environmental toxins such as lead or mercury, or was it adverse reactions to medications that lead to high fevers, brain inflammation or seizures? We must get answers to these questions.

And he talks some about the hearings last November.  He called the CDC Lady on her evasiveness too.  Good to know that at least SOME of our of lawmakers have a functional bs filter:

I was pleased to participate in a November 2012 House Oversight and Government Reform hearing on the Federal Response to Autism. That was one of the most attended hearings I have participated in since coming to Washington in 2009. Indeed at this hearing it was standing room only, and overflow rooms had to be used to accommodate the public. This was a much anticipated hearing from many parents of children suffering from Autism who want clear and unbiased answers to questions surrounding the epidemic.  I, like many in Congress, were frustrated with the lackluster response from the federal witnesses, particularly the CDC witness that was evasive and took more than five months to respond to the Committee's questions. The responses that finally arrived this month were incomplete, often evasive, and showed a complete lack of urgency on the part of the CDC. I was also disappointed that the federal government witnesses did not have the courtesy to remain at the hearing to listen to the testimony of the public panel representing non-profit organizations and academic institutions focused on Autism and Asperger's Syndrome....

Before coming to Congress in 2009, I heard from some in the autism community who have advocated for a retrospective study to examine whether there are different health outcomes when comparing vaccinated children and unvaccinated children, including autism and chronic conditions. I have continued to hear these requests over the past four years. At the hearing I asked CDC if they had conducted such a study and they said they've done dozens of studies related to autism but never have looked at a comparison of vaccinated versus unvaccinated. In fact, a recent study they published compared fully vaccinated children to those who were not fully vaccinated, but for some reason it did not include data on completely unvaccinated children. Seems like common sense to do a study comparing vaccinated children vs unvaccinated and this week I was pleased to be joined by my colleague Rep. Carolyn Maloney (D-NY) in introducing H.R. 1757, The Vaccine Safety Study Act.  This would direct the National Institutes of Health to conduct a retrospective study of health outcomes, including autism, of vaccinated versus unvaccinated children. That should bring an answer to this decades long question

.

So, please, call your lawmaker and ask them to cosponsor this bill. Its ridiculous that its going to take an act of congress, but I’ll frankly be surprised if we can get this passed given the, ahem, relationship between the pharmaceutical companies and our government.

The GFCF Kitchen, Cleaning up

I am going to admit that we don’t do the best job of being completely non toxic when it comes to household cleaners, but we do try.

Here are my favorites:
1.My Steam mop.  No chemicals AT ALL.  Its brilliant. And I mop way more often with it than I did without it. Bonus, the pads are washable not throwaway.  Its holding up really well, too. I’ve had it since November with no issue.

2. Boiling water.  Seriously. On my oventop, I will pour boiling water and let it sit to loosen crusties, and then I’ll use a lot of elbow grease and a little dishwashing detergent.   Also works on countertops, but its best if you have a lip on the edge or you’ll make a horrible mess.

3. Dr Bronners Castile Soap.   I make a spray with 2TB of it and a bottle of water and use for quick clean ups.  Unless its horribly soiled in which I have to use 409.

4. Foaming handsoap from my friend Nicole’s shop.  She’s a fellow autism mom, and somehow managed to make completely nontoxic, yummy feeling foaming handsoap.  Love the stuff.  I also use her GFCF bar for Dominic to bathe with.

GFCF Kitchen / Potlucks and dinner parties

You've been invited to someone's home for a potluck or dinner party and encouraged to bring along your dietarily restricted kiddo.  What do you take along that will be enjoyed both by your child and the other gathering attendees.

Even bigger - you host a potluck dinner party and provide the majority of the food items.  What do you make that will feed everyone including your kid??

Here're some of my go to's that Dominic loves

Finger Food:
Raw veggie tray with homemade hummus
Raw fruit tray with cinnamon/honey dip
Seed crackers (from Costco) with smoked salmon, onion and caper on top

Meats
Rolled up nitrate free Deli meat
Cocktail meatballs - make small versions of the meatballs i posted here and stick pretty toothpicks in them

BBQ Pork in the crockpot with GF bread (and regular for other people)

Sides
Pasta Salad with GF pasta (this is best fresh, it doesn't hold well in the fridge)
Potato Salad - any german potato salad with mustard/mayo/relish dressing is fine.  don't thin w/milk, thin with water if needed.

Sweets
I love this cookbook and have baked most of the recipes that have dairy free options.




Recipes:
Hummus:  Put in the running food processor in this order:
4 cloves garlic
2 cans of Chickpeas + 1 can of liquid / or 4C of cooked rehydrated chickpease plus 1c liquid you boiled them in
1 TB tahini
1 squeeze lemon
To taste: Salt, cumin, cayenne
Olive oil to  desired texture
You can get fancy and throw in avocado or roasted red bel pepper or basil leaves. Sky is the limit.

Cinnamon Honey Dip - Add 1Tsp cinnamon to 1C honey. Taste and adjust to taste.

Pasta salad - 1 box GF pasta, we like Ancient harvests.  Italian dressing, finely diced red bell pepper, capers, fine diced red onions, chopped canned artichoke hearts and minced black olives.  mix to your preferred amounts.

GFCF Kitchen / They drink what?

So you ask... Enough about food, what does your kid drink??

Water

Seriously.  That is ALL Dominic drinks, ever.

 

Okay, you need more info?  Lets review –

No casein - which rules out animal milks of all sorts, except Camel and lets face it, camel milk is hard to get your hands on.

No Soy – no soy milk or anything that has the additive Soy Lecithin in it

No Carrageenan – its a neurotoxic chemical, and is added to most if not all commercial seed and nut milks (and yogurts for that matter)

No Soda of any variety  – do  you really need a why here?

No juice – Juice is basically sugar. And if you’re moving towards the CD protocol which has been so good for Dominic, you cannot have juice of any kind because the level of antioxidant activity in the juice will counteract the oxidation work the CD is doing on your pathogens.  

No Koolaid or other powdered drink – I hyperventilate thinking about the artificial colors, flavors, and SUGAR in them

Dominic COULD, if he really wanted to, drink herbal tea sweetened with Stevia as long as it didn’t involve green or black tea leaves (both are too high in antioxidents to use with CD).  But he doesn’t tend to want to.

So what do you pour on Cereal.

Nothing.  On the rare occasion that we give Dominic boxed cereal (he does like rice chex, but hello GMO and Sugar), he eats it dry.

 All of that said, if you wanted to go to the effort of making your own Nut or Seed milks, by all means go for it.  

If your child won't drink water straight as is, you'll have to start them with watered down juice (apple or pear) and fade the juice out as rapidly as possible

And this is why...

we usually wait for him to go to bed before we eat food that he cannot have.

Tonight Rod brought home pizza for he and I.   Dominic was just finishing his bath.  he got out, came to the table, said "I want SMELL", leaned over, sniffed daintily, and said "good".

and then he got ready for bed. 

Still makes me sad that i haven't come up with a decent pizza substitution for him...

GFCF Kitchen // Eating out

When you first realize the absolute breadth of feeding your child completely gluten, casein, and soy free, you think you may never eat out again as a family.It is actually very possible to eat out on this diet.  Here’re some guidelines and examples…

First – fast food isn’t do-able, and you shouldn’t eat fast food anyway for other health reasons. So goodbye PopEyes Chicken and Arbys curly fries.  Nice to have known you.

Second, Know your restaurants.  Look at their menus’ online.  Do they have Allergy Free menu items?    Call them before you go, and find out things about them:

1. Do they cook from scratch or are their products premade in a factory and delivered? 
Red Lobster, for example, doesn’t cook from scratch so they cannot accommodate requests to leave ingrediants out.   We once went to Joe’s Crab shack and had an argument with them because they premade all the broccoli and couldn’t leave the butter out. Bizarre thing to premake, if you ask me.  We haven’t been back since.

2. Do they offer allergy free menus?
 I know that On the Border and Red Robin have menus specifically for various allergies.    If they have an allergy free menu, they cook from scratch.

3. Can they cook your meal in a clean skillet instead of the grill (our Red Robin has a dedicated skillet for allergic folks).  Do they have a gluten free fryer? (5 Guys Burgers and Fries and Red Robin do). 

Be very clear up front with the server exactly what you want and what allergies your child has.    BJ’s brewery in Colorado Springs policy is to send a manager by to confirm allergy details before food is cooked which is a nice feature.   For Dominic, I ALWAYS order the same protein regardless of where we are – a plain grilled chicken breast.  Then I’ll order either potato some way or rice (no butter), and a steamed vegetable (no butter).   Most places can do this.  We’ve even managed to get Italian places (Carrabas) to safely feed Dominic.  Chinese and Japanese are harder but if you ask for Fried rice no MSG, no soy sauce, it can work.  The only Mexican that really works is the On The Border kind of place.

4. Inspect the dishes when they arrive.
We learned this lesson the hard way  and now we check all of his dishes for food residue every single time.