Wednesday, October 7, 2015

Ask me about my art

Dominic came home today with a sticker on his shirt that said "Ask me about my Art".  This was unusual so we did.  He opened his backpack and handed me a bundle that consisted of these:

The original artwork:
(look at how legible his name is!!  I suspect a teacher did the outline of the bird for him, and I am positive the coloring was all him)

A teaser page of stickers... these are awesome.  I don't know what to do with them, but they are AWESOME

And an order form.  He is participating in a school fundraiser with this.   Let me say that again.  He is participating in the school fundraiser.

This is a total first here folks.   And I'm so excited I'm going to go order some cool stuff with his art on it.  If you would like to support his elementary school, you may go HERE and use access code zh4zj4lk3.

Tuesday, October 6, 2015

Tweaking protocol... one little thing at a time

So the last few nights, Dominic's footbaths have been jet black, with zero foam or bubbles.  This means a couple of things.

1. a huge liver release (finally!!!)
2.  we've finally got our anti inflammatories and anti fungals to the right level (HOORAY!!!!!)

I texted a picture of the footbaths over to our Naturopath and asked her about increasing liver support.  We had a consult today and decided to both increase the dosage of liver support supplementation by 50% AND add castor oil packs to his liver 3 days on / 1 day off.   The castor oil should do double duty as bringing his body into "rest and restore" versus "flight or fight".

Which segues nicely into the biggest concern I've had. Dominic's adrenals are tapped out.  They have been for years and none of the plethora of adrenal supps we have used over the years have helped.  Specifically, his corstisol levels have historically been flat (last test was back in the DAN days), he ALWAYS hits for tapped adrenals at our chiropractors office, and we've got this funky dilated eyes at the end of the day after a hot bath.   One of my TMR friends watched the videos i put up the other day showing our vision therapy exercises and gave me the feedback that he looks completely in "flight or fight" mode.

So, using the logic that I learned from Charlie over at MitoSynergy - my brain is doing this.  If the body is not making enough ATP (cellular energy at the mitochondrial level), then the body has to use the adrenals to function.  I asked Dr Kara to take a look at Dominic's genetic mutations with an eye for mitochondrial disorder. He does have at least 2 of the classic mito mutations, SOD and  NADH and he's got some of the lower tone stuff (an awkward gait when running, difficulty with fine motor), and none of the plethora of adrenal sup's we've tried have done anything.   So, all together those logically point to a possible mitochondrial disorder.  We're going to start Dominic on a mitochondrial support supplement as our next official thing.  Unfortunately MitoSynergy products make Dominic go bananas.  Dr Kara will research and pick the best mito supplement for Dominic given his allergies (her preferred brand has cornstarch in it and he's allergic to corn)

After 4ish weeks on the mito supp, we will add the methylated B vitamins.   The idea here is to get all the pathways functioning (which is why we've got Sam-E and Glutathione onboard) before we add the methylated B vitamins so that his body can actually have its best possible shot at maximizing them.

This means I need to do a couple of more things related to mitochondrial disease
1. probably get him formally diagnosed with it - as that will forever exempt him medically from vaccines AND mean that we get special treatment should he need surgical anesthesia. (nitrous oxide is a huge no-no for mito kids)
2.  Research the crap out of mito. Its not my forte at all, but my gut says we need to go this direction.
3.  Get an Autism Is Medical USB bracelet/key chain and get all his records condensed there.

Mito is controversial.  Not going to lie, I don't like going down this path.  Lots of doctors don't believe in it, because its an emerging field and they weren't trained in it.  Makes it hard to navigate and makes medical kidnapping peer over the horizon.  

Monday, October 5, 2015

Speech therapy update

So I had asked our speech therapist to give me age equivalencies last year vs this year with the testing she does.

And lets all remember that we've been pushing Dominic so hard to move along his speech, both receptive and expressive, which both require an integrated rooting reflex.... when his rooting reflex is disintegrated.  So we've been trying to get walls to stand up when there was no foundation.

So - here we go

Type of test              This year           last year
expressive                 4years               3 years 6 months
receptive                    6years 3mo      5 years 6 months
articulation                he missed 13     he missed 16 (both of these score as less than 5 years old, nothing more specific)

Then we did the Social Pragmatic  test which has a range of scoring.  Last year he got a 69 and in order to be age equivalent, he needed a 132.  This year, he got a 99 and needed 136.  So huge improvement.

I also expressed to our lead speech therapist my displeasure that the new ST has started with yes/no pecs.  I feel like not only is that a step backwards, its undoing things that we are doing.    It will either be handled or i'll pull him off the new girls schedule and we'll focus on the rooting and moro reflexes and build that foundation so that the speech therapy will actually get us somewhere.

Sunday, October 4, 2015

Vision Therapy, Homework, day 1

Documenting so we have something to come back and look at.  This is our first effort at doing the vision therapy exercises at home and I've documented them via video so we can come back to it later and compare.

First up is the Marsden ball. He's supposed to keep his head still and follow it with each eye, one at a time (hence the pirate look).  His eyes are totally not moving at all.   Its a starting point.


Then he has to read letters off a block of letters in a certain order, with one eye patched, while crossing midline with the open eye.  He is better at this. I think he just doesn't understand the ball.

So. We are supposed to work up to 15 minutes a day of vision activities like this.  I think we got 3-4 minutes on our first shot.  I'll time it on the next go around.

Saturday, October 3, 2015

documenting for posterity....

One of our EVERY day things is that I make fresh vegetable juice out of (organic all) carrots, celery, beets, cucumber, kale and apple.   This is for all of us.   We've been doing it about a year now.  Beets are VERY RED.

yesterday morning, I had an early conference call for work, so Dominic was finishing his juice and breakfast in the other room with Daddy.  After he went to school I wandered into the kitchen for more caffeine and it looked like a crime scene.   Red on the ceiling, walls, floor.  Most of it was in distinct splatter looking spots, but the normally white cubbard doors right under my sink were a fairly uniform pink.

Upon further searching, we discovered a VERY pink (when it should've been cream colored) dish towel.  Which explained the pink cubbard doors.

Kiddo made a huge mess.

Do ya'll get that?????  How big that is????

After school, I was in the office finishing up work and Dominic came in to show me a hole in his jeans.  I told him to take them off and i would fix it later.  (intending to put them in the goodwill bin because they're pretty worn out.)

He went to the guestroom, opened the closet, got in my sewing basket for a random purple fabric with skeletons on it, took his pants off, and brought me both.  Then he emphatically said "FIX IT".
I got my scissors, thread, etc, and took the purple fabric and he said "CUT IT".  I put a purple patch on his jeans, he put them back on, and everyone is happy.

Friday, October 2, 2015

Field day!!!

Yesterday was Dominic's last field day as an elementary school student (I KNOW).  So 5th graders parents are invited over to watch and be supportive.  We snuck over for an hour over my lunch break.   

First.... He was doing really well following social cues.   I was very impressed.  He stayed with his group -= we got there for the 50 yard dash, which he got a first place ribbon in, long jump, relay race, and tug of war.  We left before the sack race which probably would've been HILARIOUS, but I ran out of lunch hour.

Here are pics and videos.  He's in the red shirt and jeans.

We had a quick conversation with our SPED coordinator and she mentioned that in the last month his verbals have gone through the roof (with the removal of screen time / videos).  We had to call an early IEP because several of his goals are computer based... and he's supposed to get zero computer time for the duration of vision therapy.   IEP will be end of October.   I love my school / sped department - they have not given us even an iota of grief for these changes and totally scheduled the iep within the legally required timeframe (1 month).    We are lucky.  I am nervous about the transition to middle school.  New staff / new school,.  I will have to get them trained up.

Thursday, October 1, 2015

And he is a bobcat!

Tonight's cub scout meeting was held at the park up the street....  The plan was to do a hike and then an awards ceremony.  We knew Dominic would be getting his Bobcat Badge, so we were there will bells on.   As the park has a playground... of course he wanted to go play for awhile first.... 

Then the hike got underway.  This is Dominic with his friend Sidney.  Actually a number of the boys are his friends.  It makes my heart happy when they tell me that he's happy at school.   He is definately well known with his peers, and that makes me happy.  They've been with him since Kindegarten and they get him.    The hike started with a bang - lots of little boys running....

And Dominic pretty rapidly decided the place he wanted to be was at the very front.  Here he is where he spent most of the hike - holding scoutmaster Tim's hand at the lead of the pack.  So grateful its an autism Dad who is our scout master.  By this point I'd fallen behind because a little kiddo fell and scratched his arm and because I had my GIANT purse, I had bandaids.  Have to laugh.

At one point the front of the pack lost the back of the pack and had to sit down while Scoutmaster Tim went to locate them.  That was mildly amusing.

Once located, we all headed back to the pavilion and did the awards ceremony.  

In true Dominic fashion, he was offended at something being pinned to his shirt, so we had to take it off basically immediately, but he's officially a bobcat. Which is so cool.

Wednesday, September 30, 2015

IonCleanse by AMD - Month 9 results

It just keeps on coming.  The little things are stacking up and the inchstones are turning into foot-stones and yard- stones.  Soon they will be milestones.

So.  What has month 9 brought us?

Dominic has been nearly completely screen free all month.  We started that the beginning of September - we removed all video games from his life and reduced his TV time down to less than half an hour a day most days.  We did instigate a weekend family movie afternoon twice this month and will probably keep it up at that rate.  After we finish the Harry Potter series, we are going to start the original star wars trilogy.

Dominic was able to attend to the instructions for the primitive reflex integration testing.  Which led us down a track of validating what I've said for years about a left hemisphere brain injury. It feels good to be validated. 

He LEARNED HOW TO SWING!!  And he loves it.

We have attended cub scout meetings all month even though we are conflicted on them.   Tonight (Sept 30), he will receive his bobcat badge for saying the scout law and oath.  Its kind of a big deal.  Look for pictures tomorrow.

He loves bedtime story now.  He used to not even allow it.  Now... he joins in.

He has a crush on a girl AND has totally left the very breakable halloween decorations alone.

From Facebook on Sept 29 -so I didn't even blog it...
"Daddy was getting ready to leave for work when Dominic announced that Kama (our standard poodle) was "Dirty" and needed a "Baf". By the time I said goodbye to my husband I was hearing water running. Fearing for my bathroom... i went to supervise. Kiddo had Kama's collar off, the dog in the bathtub, filling the tub, and rinsing the dog with a cup of water. i supervised the soap part and Dominic did the rest."

AND he asked for help hanging the towel over the shower curtain rod because he cannot reach it.  "Mommy, Hang it up"

Sensory Balancing Therapy

I rarely impulse buy at conferences, especially spendy items. 

I knew that I wanted to attend the sensory balancing presentation at GR because of what we're working on right now with Dominic's vision therapy and primitive reflex integration work.  Unfortunately I was prepping for the IonCleanse presentation so didn't catch the presentation.  I did spend a good half an hour discussing our situation (both Dominic's sensory issues and Daddy's lingering head injury) with the creator of this method, Kelly Armstrong, and in fact purchased a device.    It was expensive, so I'm glad I worked a good portion of the conference because I ended up coming out even.

From the manual:

"Sensory Balancing therapy is the physical input of concentrated microcurrent or acupressure to therapeutically active points in order to assist the neurological tasks of processing and integrating sensory information from the body and the environment in order to contribute to improvement in emotional regulation, learning, behavior, and participation in daily life"

From my conversations with Kelly, I understand that this microcurrent can stimulate tissue growth, cellular communication, and open pathways.  Like a dork (because i hadn't realized they were right beside the OxyHealth booth), I piped up and said "Oh, kind of like HBOT", and she laughed and said exactly.

Also from the manual:
"When injured cells become electrically imbalanced, the application of microcurrent is able to help return the damaged cells to a normal bio-electrical state, re-initiating cellular activity.  Research has shown that micro current impulses enhance three variables critical to healing:  ATP (adenosine triphosphate), protein synthesis, and cellular membrane transports.  These 3 key healing variables are only released in a parasymptathe3ic state, strongly suggesting that microcurrent can help rebalance the autonomic nervous system"

The unit was originally developed as a pain relief and used only by practioners until April 2015 when the FDA cleared it for sales to consumers directly. 

I did clear it with Dr Watt Monday that this will be in no way detrimental to what we're going to do in vision therapy.  Also he took a picture of it and he might be buying one.  He was very intrigued.

Tuesday, September 29, 2015

Vision Therapy - Here we go!

Today we got the results of the last 2 weeks of intensive vision therapy testing and the treatment plan. I was actually not suprised at all.

Dominics actual vision is 20/20.  (tested with both eyes together not singly)

First, the doctors specific concerns:
Tracking:  The ability to move your eyes together, aka eye training.  Dominic is unable to fixate on and follow an object.  We will be working on moving his eyes without moving his head.

Eye Teaming, aka Binocularity:  This is getting the eyes to work together.  Dominic has a convergence insufficiency.  His eyes do not focus together on items 6-8 inches away from his face and closer.   Specifically the right eye drifts off.

They were unable to get an accurate measure of his depth perception, but we suspect its there and and not perfect.  It is part of the convergence insufficiency problem.

Interesting facts - 60-80% of the brain deals with vision processing per current research.  You can diagnose a concussion with a fast eye test.  Fascinating stuff.

Here are the tests that the Doc did and Dominic's scoring. (which interestingly is in line with the current OT age based scoring.  I like it when things line up like that)

VMI (visual motor integration) test:  Dominics outright score is 5 years 6 months.  THe subtests of motor coordination/fine motor he got 4 years 11months and the visual processing/perception he got 6years 8 months.

Interestingly, he did much better with larger pictures than smaller in this test.  One of the things we will ask school to do is blow up all exercises so they are really big font.   Size apparently does matter when it comes to vision therapy.

Dominic has developed an adaptive habit, we don't know from where - either school or alpine - of placing dots where his lines need to stop and start.  When he has the stop/start dots he can do a very good job at copying a shape.  Without the dots he was kind of a hot mess.  This is called a visual closure issue - the ability to complete an image. 

 Perception test (complete the incomplete human picture)
 This is a developmental test that is a little more subjective with the scoring.  He scored at 5 years old on it with glimpses of 10 (he gave the guy eyebrows which a 10yo would do, but he pointed both feet the same direction which scores as 4 years old.  really interesting scoring)

Split form board test
This was shapes in pieces that he had to put back in a puzzle.  He completed it in 55 seconds which is a 9year old level.

Rotating Keys test
He completed in 1 minute and 30 second AND crossed midline to do it.  That is called the Wachs Cognitive analysis and he score 5 years 11months.


So.  We are guestimating 30-40 sessions of Vision Therapy to sort out the above issues or 8-10 months.  Fixing his vision will help so much with reading.  Basically the poor kiddo has double vision right now when he tries to read.

The doctor reevaluates every 8 sessions

And in a hugely amusing twist apparently the office manager typed up a script for use with the insurance company based on what I told her I used to get insurance to agree to cover this and 2 more people have now gotten insurance coverage.  Insurance is a game and if you don't know how to play it they won't help you.  You do... and they get real nice real fast.

Monday, September 28, 2015

Mommy goes to generation rescue

It has been a year of conferences. I have just finished the weekend at the autism education summit in Dallas Texas which is presented by generation rescue.  This was my first time at generation rescue and it's a completely different feel from both autism one and taca. There were not as many familiar faces, but I met a lot of really cool new ones. I also met and got a picture with Jenny McCarthy which is really exciting because I got to tell her about how when Dominic was first diagnosed her book mother warriors was the one that got me through the worst of it.   That it was the book that gave me steel in my spine.  She was really very very sweet and so happy to hear my story when I said that I would love to get a selfie with her this is what happened - she invited us behind the table which made her security guard a little twitchy then Donnie Wahlberg and took my camera and this picture (my friend Tiffany is the other person in there)

Then when I attended the evening social activity which was an hors d'oeuvres and band and cocktails kind of thing I met up with Jacqueline Laurita (she is the actress in real housewives of New Jersey.).  She and her husband have a child with autism and they support generation rescue. So the thinking moms revolution team TMR girls who were here took this picture below with Jacqueline

We then proceeded to dance and be silly the remainder of the evening. 2 days later my knees are still speaking to me.

Overall the feel is more intimate than a1 where you feel lost and more comprehensive than TACA was.  Kind of like the "just right" amount of information and vendors.   I heard numbers wise that they had about 3/4 of the attendance that A1 had this year.  It felt more intimate tho, and that might have been because there were only 3 tracks going on at any one time and everything was in one spot where as at A1 there's 2 sides of the hotel involved.   While there were not presentations on more controversial cutting edge stuff like A1 has, those treatments were mentioned in passing in the Keynote and whispered about in the hallways.  I had a fascinating discussion with a MAPS doctor about how CD and other oxidative protocols actually switch on a gene (and i can't remember which one, I wish I had written it down - something to do with redox signalling), BUT if done for too long, it switches the gene back off.  Which actually makes our experience with CD make a lot of sense.

I spent the majority of my time working the IonCleanse by AMD Booth and getting to share our story with other parents.  We ran 6 machines simultaneously and were busy the ENTIRE weekend - even first thing Sunday morning after everyone went out Saturday night.  What was coolest about Sunday was that we had a ton of kiddos come thru the ioncleanse booth- which I hadn't seen before.  It was amazing and heartbreaking all at the same time to see the nuances that get called Autism.  Such beauty and tragedy simultaneously.  i also met and got the business card of a functional medicine pediatrician in the Dallas area who is working hard to stop the damage... they vaccinate one at a time and super slow and she's totally up on treaments.  If you are in the Dallas area and looking for a pediatrician that gets it, drop me an email and I'll share her information.

Sunday, September 27, 2015

Blast from the past

Rerunning some old blog posts that i loved ... this was October of 2009.  He looks SO small.  He was 5, and had just started ABA a few months prior.  So much has changed.....


Halloween party at Alpine:

Doesn't he look like Daniel Radcliffe (HArry Potter) in this picture?

Fun picture from our party this weekend. Our friend Caryn shot it...

Saturday, September 26, 2015

On Hope.

I ran this little tidbit 5 years ago - long before TMR came into my life and before AMD gave me real hope. Even before our side journeys into the unique healing and CD protocols... before the things that gave me REAL hope.


I know a while back I talked about how glad I was to have hope, and to not believe the people who tell us that we have no options for treatment for Dominic. How I'd rather have false hope than false despair. I've also talked with many people about choosing to not allow anyone to steal my hope - those people who tell me that i'm in denial... that goes right in one ear and out the other, because I simply won't allow anyone to take my hope away.

Anyway. Today over at Hopeful Parents I caught this lovely article about wishes vs. Hope.

Love this quote
"Hoping isn't like wishing. Hope isn't directed at anyone and is rooted firmly in reality. Hope requires hard work, long days and exhausting nights... Hope admits that success isn't granted, it is earned. Hope knows that achievement comes with a few battle scars. It is optimistic without being flighty. Hope gets up even when it's been knocked down a few times. Hope knows that sometimes it will lose, but it tries anyway."

Friday, September 25, 2015

I am no longer socially acceptable...

So i'm finishing up my appointment with my chiropractor and visiting with him when in walks a woman with fibromyalgia.  She talks for a second and I looked at her and said "You know not to get a flu shot right" - she said why.

I took a deep breath

Chiro braced himself.

And I launched into my spiel about how fibro is most likely caused by underlying mitochondrial dysfunction where cells don't manufacture enough ATP to fuel the body. So the body steals from the adrenals and other organs to just function. Which is why she's exhausted and achey.  And how if she adds the assault of a flu shot to already struggling cellular level energy... she's going to tank herself.

She got very quiet.

Chiro was chuckling under his breath.

I gave her my business card and told her to spend some time reading at the Thinking Moms Revolution.

Thursday, September 24, 2015

Not just an American problem...

In the UK, a mom committed suicide when officials denied her severely autistic child a residential placement.

Here's a Murder/Suicide where Mom killed her severely autistic 16yo son in the UK
HEre's a Murder/Suicide in British Columbia...
and those took me a whopping 10 seconds to find on google.  There are a plethora more. 

Meanwhile, in the US we're up to double digits of autistic kids gone wandering and dying this summer alone.

What is it going to take to stop the madness???

There simply aren't the services required ANYWHERE on the planet to adequately support families with autism.  For anyone not directly affected, there seems to be NO sense of urgency.  There seems to be no concept of how much strain autism families are under - emotionally, financially, even physically.

Emotionally - we are drained.  We work all day, and then we come home and provide supervision at a level that a toddler requires to our preteens and teens.   We spend a ton of time grocery shopping because of all the label reading and spend hours cooking special diets because if they get into food they shouldn't... they regress.

Financially - we would spend every penny we have taking care of our kids.  This means we don't have money for lots of other stuff.  I saw a crowdfunding page a week or so ago for an autism mom to be able to put her brothers ashes in an urn.  Let that sink in.  She was hoping for a little extra to be able to HAVE a memorial service.

Physically - many of my facebook friends have older teens / young 20's boys.  They are Big.  Some are in diapers, some are wearing helmets.   All three that i'm thinking about right now have seizures and they have hurt themselves seizing badly. One broke his collarbone.    Imagine the level of care and supervision a 15 month old baby requires.  thats the level of supervision these adults with autism need.  Where do they get it?  Their parents.  Until their parents cannot anymore.  Then in theory the state should step in.

In the US, the InterAgency Autism Coordination committee is on hiatus.  They haven't met in over a year.    No one is using the word Epidemic except the parents of affected children.  

They don't care.