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.



Wednesday, September 23, 2015

This and That

Catch up post....

The weekend was a long weekend, no school Friday or Monday.  Dominic had  a fantastic time playing outside for most of it.  he's finally loving swinging. It took him long enough to learn that now his most favorite thing ever is to get way high. I'm thrilled he's mastered this skill.  He is doing ridiculously well with minimal to no television and zero video games.  Its astonishing. I really expected him to just turn the TV on, but he seems to "get" that i'll just turn it right back off.


~~~~~

We had the second and final vision therapy deep dive evaluation yesterday.  Dominic played with blocks, drew shapes and lines, and did the 3D TV.  The most interesting part of the appointment was the OD telling us that Daddy has a convergence insufficiency and midline shift that are potentially causing the horrible headaches he's had since the car accident in 2014.   And that he can fix it with therapy.  So we'll be getting that formally underway.  He also said that I don't relax my eyes.  Imagine that.   Next Monday we have our parent meeting and get the treatment plan, and we've already got an acceptable time slot for Dominic's vision therapy.

 ~~~~~

Note from school that came home today "He had a great day - I think he has a crush on one of the 3rd graders.  He gets absolutely giggly when she comes in the room when he's here - YIKES".  Well, he is 10.  We have not started the physical transformation of puberty but I know it will be knocking on the door any minute.   We think its adorable that he's got a crush.

~~~~~

We put up the Halloween decorations for the first time in 9 years.  And Dominic LOVES them.  No signs of being aggressive with them.  It was like seeing old friends. :)


~~~

I'm leaving Very Early Friday morning to head to Dallas to Generation Rescue's Autism Education Summit.  I will be spending a lot of time working the AMD booth, and telling our story at their presentation, but expect to have some time to go to a few of the presentations I want to see and will be sociable in the evenings.  I might even wear a dress on Saturday for the dinner and that happens rarely enough ya'll should be looking out for lightening strikes.   Come see me if you're at the conference this weekend. 





Tuesday, September 22, 2015

OT accomplishment


This puppy took Dominic 4 weeks at OT.  (1 session per week he worked on it).  He had a really hard time with knocking the pegs off and would get a row done and then knock some off and say "Oh NO! Fix IT".  So they worked on it until he finished it, which was Friday.

And as a reward, he got to go to Toys R Us and pick out a toy after therapy.  In the 13 months we've been doing this, this  was our first post therapy Toy purchase, so its a rarety.  It took kind of a while for him to decide what he wanted:


Monday, September 21, 2015

What can I do?

Every chance I get, I tell Dominic's story.  I talk about GMO's and the pollution in the air and vaccines and how they are changing our children.  I talk about how insurance companies discriminate, and how the government screws families.

I figure sometimes the person is receptive and sometimes they're not, but its never a waste of my time to tell our story.

So after that blog I wrote about Jonny a few days ago, the ENTIRE Shandy Clinic staff is now reading my blog (or at least read that one).  And I had a conversation with one of their administrators - we shall call him B -  on Friday afternoon.  We talked actually about how Donald Trump, Ben Carson and Rand Paul all agree that there should be fewer and further apart vaccines.  Mind you this is a man who makes his living in a pediatric therapy clinic whose business is booming.

So I followed that conversation up by emailing him  this amazing link about WHY the vaccine-autism issue is not going away and why it will be a presidential election issues this time.   Go read it. I'll wait.  Its a really good article.

I got an email back from B basically wanting to know what he could do to help - could he be a voice with the Moms, could he make a difference, etc.  So this blog post today is about what YOU - an adult not directly affected by vaccine injury, autism, or your own special needs child - can do to help.

1.  Call your legislators at a state and national level.  Have them read that link. Ask the state legislators why they would want to mandate an industry with no liability against injury.  Ask the national level ones why, after Senator Posey begged for it, have hearings not been called on the #CDCWhistleblower scandal.   Why have they not had hearings on the CDC's internal fraud?  Those legislator work for us, and as a community autism parents are EXHAUSTED from day to day living and we just often don't have the energy to keep the pressure on the politicians.  We are so grateful that Nation Of Islam has joined us.  They are bringing energy we just don't have

2.  Be a resource.  For B, an administrator at a pediatric therapy clinic, this means maybe create a packet of resources for the newly diagnosed, VERY overwhelmed parent.  I would be happy to help you with that.   For those of you who don't work in a front line office, being a resource means sharing information (like my blog, like The Thinking Moms Revolution blog, Generation Rescue's website, TACA's website, Autism is Medical's webiste, etc)  that helps newly diagnosed parents know they're not alone and gives them some hope.

3.  Be supportive.   This can be as little as HEARING our stories and letting us know that you HEAR us.  This can be adopting an affected family and bringing them dinner or offering to babysit semi regularly so mom and dad can get a break.  This can be organizing through a community group (a church, scout troop, ladies quilting group, WHATEVER) a volunteer day to do something for autism families that they wouldn't otherwise be able to get done (a friend of mine just had her flooring replaced by a group like this - she wouldn't have been able to do it without them).  It could be organizing a fundraiser to donate to a grant program (TeamTMR has a great one) and then telling people about that grant program, because everything TeamTMR brings in from location specific fundraisers is granted to recipients in that location (nifty, huh).  Or maybe it means sponsoring a family to go to a national conference.

4.  Share our stories.  We tell them to you for a reason - because we are a grass roots, parent led movement trying to affect change.  When you share our stories - when you say "I know another mom that happened to" - you make that overwhelmed, lonely, terrified, grieving parent in your waiting room feel a little less alone, and when you said "and that child is now making great progress" - you give them hope.  At all stages of the autism journey, hope is the biggest gift you can give.


5.  Be an agent of change.  Tell that young pregnant woman to do her homework on vaccines.  We're not telling people not to vaccinate, we're telling people to educate themselves.  To ask the question of why did our generation get 6 vaccines and now kids need nearly 50.  Ask themselves why we should trust an industry with no tort protection to do the safety studies.  Ask themselves to read the inserts, research the actual diseases the vaccines should prevent and make an educated decision.  For example - hepatitis B is a bloodborne and sexually transmitted disease.  If mom isn't a carrier there is NO reason a 1 day old baby should be given it.  They don't generally sleep around and share needles.  

Sunday, September 20, 2015

Bedtime story

So, Dominic has a new favorite bedtimes story book that some friends gifted us.  By favorite I mean he has us read it to him EVERY night, sometimes twice if he can con Daddy into reading it again after I've read it.   He provides many of the sound effects.

I had technical difficulties which is why the video doesn't start right at the beginning, but you get the idea.

Telling you -  This school year will be the year he learns to read.



I share these things not only so you can SEE the progress you are making but also because I'm inordinately proud of how hard he has worked to get this far.  This is mount everest guys, and we are climbing.

Saturday, September 19, 2015

I emailed The Donald.

And this is what it said.  I'll let you know if he writes back.While I was at it, i sent slightly adjusted versions to Dr Carson and Senator Paul. 


Thank you for having the courage and integrity to speak the truth about vaccines and autism.

My son has regressive autism.  He regressed shortly after his third birthday.  He went from speaking in sentances and playing like a normal healthy child to not.

He's 10 now.  I'm out over a quarter of a million dollars OUT OF POCKET for therapies and biomedical protocols that have helped, but its been slow going.  (and my health insurance has paid probably triple that)

We recently did a full genetic profile that showed he is genetically incapable of  processing vaccines.  What I want to know is if I as a parent spend $99 to spit in a test tube in and learn this are we not screening ALL newborns for the genetic mutations (MTHFR, CBS, COMT) that would indicate they react negatively to vaccines?  Why are parents leading the way?  The answer is, of course, that the CDC is riddled with fraud, in bed with the pharmaceutical industry (Julie Gerberding's career change, anyone?) and afraid that admitting a one size fits all approach for vaccines doesn't work will get them fired.

Further, with states MANDATING vaccines now (see California SB277) to go to school, I believe we will see a huge increase in kindergartners and seventh graders regressing into autism. I am imploring you to please ask the hard questions about fraud, about the CDC Whistleblower who as admitted they falsified studies showing autism prevalence in African American babies, and about the fact that there are NO studies showing safety of the current vaccine schedule.  I want to know why the US Government is letting an industry with no tort protection have free rein.

I also predict adult mandates will lead to a huge increase in parkinsons and alzheimers.

Thank you so much for not following the invisible "do not discuss" memo we all know the debates give you guys.

Friday, September 18, 2015

Scouts


So.
We are conflicted about scouts.  We're all signed up, Dominic has a webelos book, etc.


The first real meeting of the year was really controlled Chaos and I spent an hour trying to corral Dominic who kept wanting to punch the buttons on the elevator and go home, and do the work for him that he was not capable of (writing on popsicle sticks - no fine motor for that, doing a word hunt - dude he can't see the letters, etc).  I left that meeting not wanting to do scouting at all.  I'm tired enough as is, I don't need to add an hour of fighting with Dominic to get him to stay somewhere he doesn't want to stay.

We agreed we would try again because we REALLY want the social piece for him.  So this week the plan was for me to take him on Wednesday to OT at 4, come home and eat dinner then take him to his scout meeting at 6.   He had a rough OT - really didn't want to be there, cried, self injured, etc.  So when we got home I asked him if he wanted to go to scounts and he said no.  So I said okay, no big deal lets have supper, bath and bed.  And made him dinner.  I texted the scout master to tell him it had been a rough afternoon and we wouldn't be there.

then about 5 minutes before scouts started, Dominic got agitated.  he said mulitple things while crying and pointing at the car including
"go school" (scouts is right across the street from his school)
"see sidney"   (his friend who wants to have a sleepover)
"mommy car"


So I texted the scout master that we were coming afterall and we hustled over.  Fortunately its very near our house.  They were at the school playground doing work on their physical fitness belt loops.  Apparently belt loops are the boyscout version of patches.  Go figure.

Dominic did okay - he did a long jump, threw a soft ball, ran a 50 yard dash, and was able to recite the scout law (one word at a time with the scoutmaster helping him) all WITHOUT me because I got put in charge of timing the boys on the 50 yard dash.  When the time came to walk back across the street to the church, I was going to drive back because i parked at the school because we were late.  Dominic was going to walk back.  The scoutmaster is also an autism Dad.  Dominic totally bolted away from him towards me as i was pulling out of the parking lot so I drove him back. 

So ...  our SPED teacher has been a huge proponent of getting Dominic into scouts and had asked if we were doing it. When i told her we were conflicted, this is what she sent home.   So I think we will continue to take it one meeting at a time and see what happens.  There's rumors that there will be hiking and swimming soon. That would be fun.



Thursday, September 17, 2015

Jonny

Dominic and Jonny (pic shared with permission)


A month or so ago, I told you all about the OT who caught something weird about how Dominic did his drawings.  That Catch has led us to Vision Therapy and a diagnosis of Convergence insufficiency. It has led us to testing primitive reflexes and discovering they are all disintegrated on his right side. It has led to a bazillion light bulb moments about speech and fine motor skills.

That OT, Jonny, is headed to his next internship next week and today was Dominic's last appointment with him.

Over the last 7 1/2 years, Dominic has had more therapists than I can count. If I had to guess he has had between 60 and 100 different people who have worked one on one with him for the variety of disciplines (OT, ST, ABA,  para's at school, etc).  A few of those have been memorable and we have stayed in touch with.  Very few of them have been as extraordinary as Jonny.  Dominic has absolutely flourished with Jonny. 

So, Jonny, while I know your next internship is not in pediatrics, I hope you realize that you have a gift with special needs children.  You need to end up working with kids.  The Special needs community NEEDS you and therapists like you.   You have found in Dominic a brain injury that 60+ trained and certified therapists in multiple disciplines over 7 years missed.  And I REALLY hope you end up back here in Colorado Springs where we can get Dominic working with you regularly.








TMR Today!!

I'm over at TMR Today... go read...

Tuesday, September 15, 2015

So humbling

Its an amazing thing to be a part of something so big that it is changing everything.

As a IonCleanse by AMD study participant, starting last January - in the first study - I was on the front edge of this protocol that is sweeping the globe.  There are now over a thousand autism parents in the facebook group IonCleanse by AMD for ASD.  Every one of them is finding a way to get a machine even though they are prohibitively expensive. 

Because my TeamTMR and TMR family did this study that showed consistent improvements across the board almost universally.

Because we tried yet another THING.  All of us were battle hardened, and most of us had tough nuts.  We ended up writing a new protocol, a different one than the company recommended to us and they completely supported us.  We put together a detox support bag of tricks for the parents who came after us.  We put together that facebook group to offer ongoing support and community. 


Today we instituted Testimonial Tuesday.  Every time I logged into facebook, I got the FEELS from what was posted...

,.... from the 19yo tough nut who has been beating his mother up for years, with an ATEC over 100 when they started (and never under that 100 line in his life...)... down to a 66 in 2 months.

.... from the TMR sister of mine who started with me last January with an ATEC of 30, down to a 2. 

.... From my friend who catalyzed this whole thing by bringing the footbaths to her practice AND then making the connection between AMD and TMR, about her son who now indistinguishable from his peers.

... to the babies who have been not only non verbal but completely silent their entire life, who at age 4 and 5 are starting to speak

Its so AMAZING and humbling and awesome to be a part of this and to watch as this company, in combination with a radical new way of approaching autism treatment spearheaded by Pathways Natural Wellness clinic in Denver, is making huge differences.

No more can they say that the window to heal your child closes at age 7.  Not when we have adults on the severe end of the spectrum healing with this.

I have sat with parents as they tried the footbaths at multiple conferences (and will be doing that again in a few weeks at Generation Rescue) and promised them they would see results in the first 60 days or they should return the machine.  I have stood in front of a room full of strangers and told our story (I Despise Public Speaking).   If you are at GR, please come hear our story - I will be telling it again.

That Auction that TeamTMR did in August?  We were able to fund grants for 9 IonCleanse machines.  To families who would otherwise have been entirely unable to afford them on their own. 

I stand shoulder to shoulder with giants on the front lines of a war to change the course of our world and I couldn't be more humbled.

Monday, September 14, 2015

Write the day down on the Calendar!

I got a doctor to agree with me about my crazy left-hemisphere viral brain injury theory. :)


Today was our first in depth vision therapy evaluation.  Same OD that we saw for the preliminary one.   Dominic did pretty well. He was squirmy, but chilled out when i let him fiddle with my phone between tests.  First they did basic vision test - look at the pictures on the wall.  We went with animals. Love that it was an option.  When he uses both of his eyes, he is seeing about 20/20.  He is seeing better than I do with glasses.    I gave the Doc the primitive reflex test results our OT's did a few weeksd ago and he was blown away that the majority were retained the the right side / left brain hemisphere.  He AGREES WITH ME!!!!!  I seriously am ecstatic.  He's also incredibly impressed that I not only got the insurance to pay for Vision therapy, I got them to do it at an in network rate.  Apparently thats a first for his clinic. 

We then moved on to timing how fast Dominic put together a puzzle and filled out a peg board.  Dominic was pretty quick.  Then we went to the big TV with 3d glasses that tracks a lot of things.  The one that stuck with me was how well his eyes work together. Its about 65% when going left to right and about 60% when going in a circle.  Apparently this is pretty good for a first test.

Next week we do round 2.  Then the following week we get the treatment plan.  We are so excited.  I feel so validated about my brain injury theory. It also explains why all forms of HBOT have helped significantly over the years.  My next project is to manifest a way to get more HBOT.  Anyone want to gift us a soft chamber? (stop laughing, i'm only a little kidding)

Friday, September 11, 2015

Swinging

So the beginning of the school year, we mentioned to Dominic's teacher that he hadn't quite figured out how to pump his legs and move his upper body to swing.  She said to us that he might never and that was okay


I give you swinging boy who figured it out over the weekend 


Wednesday, September 9, 2015

On Pedophiles and Sexual Safety

Documenting here ... If you're on my facebook you've seen this news already.

Here's the media coverage from when it happened - when we were assured that Dominic's picture wasn't on the man's phone, etc.

From facebook on Tuesday:
I have debated posting this
And decided to because these are the kinds of issues that have to be drug into the light. These are things that all parents now have to worry about and it's compounded as a special needs parent because of all the things we will Never know because Dominic cannot tell us.
Rodney got a visit while I was at the dentist today from cspd - remember the ymca pedophile? Turns out They found a naked picture of Dominic on the guys hard drive. Taken in 2014. The only silver lining here is that D has not concept and is not traumatized. I cannot say the same about Rod and I. So tomorrow the police are coming to visit with Dominic. I have already advised them his speech issues are such they won't get anything but they have to anyway.

I have been on the phone with ymca management and am Expecting a call from their upper management tomorrow to tell me exactly what they will be doing to change policy and keep my child safe. If I cannot trust the fricking ymca who can I trust to keep him safe?

 ~~~
Then we spent an hour on the phone with one of my TMR colleagues who has been down this road herself and is a school psychologist.  She helped a ton - she was able to give us the perspective that because D never acted out, wet the bed, etc, that it was probable that there was no touching involved.  just creepy photos.
~~~~


from facebook today
So the police detective and the trained forensic investigator came over today. I gave ground rules before they got to meet Dominic - specifically that this was for them to get an impression of his verbal capacity (and lack thereof), and if they felt he was interviewable we could discuss how that could occur. That our primary objective was to maintain the status quo - which is D has no inkling of issues. They more than agreed and I called out the back for Dominic to come inside and meet our company. He came inside with a Baggie full of grasshoppers swimming in water and as soon as he saw them (not in uniform) he freaked and nearly ran outside in alarm. I got him calmed down and had him show the officers his grasshoppers. It took a whopping 10 seconds for them to agree with me that he will not be interviewed and we sent Dominic back outside. Here is what we know - the investigation is almost complete, there were hundreds of photos, including multiples of Dominic all from that same day last August. They will get the evidence to the DA. The da will figure out the charges and the arraignment will be sept 30. Based on the overwhelming evidence the detective said he would be shocked if the guy doesn't make a plea deal at some point in the legal wrangling - the evidence is such that no defense attorney would want it going before a jury. Odds are extremely good that Dominic will not have to go to court for any reason, tho that will be up to the DA And we would fight that because I don't want him in the energy. Overall, the meeting was good, they completely respected our wishes that They not traumatize him with questions (beyond what color is your grasshopper), and that we both be in the room The whole time.

~~~
Also today, I had a long conversation with the area executive director for the YMCA who will be in touch with me about the changes they will be making and who will be getting me an answer for my "where the hell was the staff" questions. 

thing is, Dominic's social skills have grown by leaps and bounds in the ymca summer camp program.  He's made friends, the campers and staff adore him, and he loves it.  he has never once indicated he didn't want to go (which we believe he would have if he was ever assaulted). We want to find a way that we can feel the YMCA will keep him safe.   I know we probably have a lawsuit here, and we haven't ruled that out. My gut instinct is that would be counterproductive and it would be better to work with them to fix their problems.  So i have offered to come to a presentation for their staff on working with autistic kiddos.   We shall see if they take me up on it.


And in the mean time, Dominic is oblivious and that is the silver lining here.

Monday, September 7, 2015

Family movie shenanigans

We bent the no screen time rule yesterday for a family viewing of Harry Potter 3.   When we asked Dominic if he wanted to watch Harry Potter or Star Wars, he thought about it and proclaimed "Potter".     We all snuggled in ....


Yes the giant oaf puppy and Dominic both were in my lap.  Fortunately they love each other 











Multitasking

Things that he does while he eats now that the TV isn't on.

Seriously - its been over a week since the TV upstairs has been turned on.




He was so funny yesterday.  This new diet has been stretching my imagination, so i was thrilled ot find breakfast sausage made from bison the other day. I sauteed that with onions and spinach and then put it into fuffin cups and covered with egg.   He liked the filling so much he at a bowl full of it for a snack.

The had an apple and went outside to swing



When he came back in, he informed me he wanted egg cups and potato heads for dinner.  Potato heads are where i slice up an already baked potato and fry until crispy in olive oil. yum.   When asked why he wanted egg cups for dinner, he very clearly said "yunmy yummy good"

Sunday, September 6, 2015

1 year of OT

So a year ago when we started OT and ST at The Shandy Clinic, Dominic recieved standardized testing from both departments.  We've done the 1 year re test for OT but not yet speech (its a timing issue. we'll get it before the month is out, no biggie).

Last year, Dominic was unable to even start the age appropriate OT test (for ages 6-10).   The OT had to use the Birth-5 test.  on  that test, he age tested at about 4 1/2. He was 9.

This year, Dominic was able to take the age appropriate test and finish the whole thing in an hour.  This alone is a HUGE accomplishment and we should be jumping up and down!   I don't have the numbers with me, but from memory he scored about age 4 1/2 for fine motor (which is why his handwriting is still on very wide lined paper with the little dots in the middle), and age 7 1/2 for upper body strength.  There was one more section that i don't remember off the top of my head and he was around age 6.

So HUGE HUGE progress in the occupational therapy arena in the last year.  Ton of milestones hit.

BUT

Lets put the filter of what we now know regarding his primitive reflexes onto this.  The OT's were testing the WALLS of a house without a foundation.  No wonder he's had to work SO hard to get where's he's gotten with fine motor.  he has compensated remarkably all across the board.  I've said for years how hard he has to work, and how we celebrate inchstones because milestones are few and far between.

Now it makes sense.  NOW we know that the problem is a lack of foundational brain activity, specifically in the left hemisphere.  The primitive reflexes are the foundation for all of these activities and the lack of their integration is going to continue to be a challenge until we get them fully integrated.

So we will be getting specific exercises from OT that will have to be done 3x a day.  Every day.  I have a suspicion that the vision processing therapy will have some overlap, and at this point I'm going to place my bet that, upon deeper testing, the optometrist discovers a brain injury in the left hemisphere of Dominic's brain.

Saturday, September 5, 2015

No rainbows or Unicorns

this is disgraceful.
Its also got to change.
we are well on our way to 50% of the pediatric population being affected by autism.

Autism of the 15 year old in diapers wearing a helmet and attacking caregivers autism.
Autism of the cannot be out of sight of a caregiver 7x24.
Autism of the severe self injurious kind.
Autism with seizures. 

There are no rainbow and unicorns to make this picture better.  Autism is NOT a personality quirk.

We as a culture have our heads in the sand while a tsumani of aggressive, medically ill children are coming of age - and we have nowhere to turn for help.  This is NOT a case of better diagnoses of something that was always there.  This is NOT a case of "current fad", in fact the latest revisions to the DSM were done so specifically to reduce the numbers of diagnoses.  Thats not oging to change the existence of a plethora of disabled children on their way to adulthood.  This is an epidemic

I hear stories, heartbreaking stories, every day.  And while we are on the road to recovery, filling in pieces like crazy, so many people aren't.  So many parents listen to the pediatrician that tells them they can do nothing.  So many parents gravitate towards the neurodiversity movement because it somehow makes them less responsible, feel less guilty for not being able to afford the big stuff.  So many children get their medical needs overlooked in the "autism" envelope.

Its disgraceful.

Get mad.
Do something.
Now.





Friday, September 4, 2015

The pieces just keep coming together...

The OT that caught Dominic's weird drawing and subsequent vision processing disorder diagnosis happens to be certified in Brain Balance.   When we were at OT on Wednesday, in passing our lead OT asked if Dominic ever integrated his rooting reflex and I gave her the deer in the headlights "I have no idea what you're babbling about look".  So Thursday's OT session was all about testing all his primitive reflexes to see what was integrated and what was not.

As a brief review, and because I've got a LOT more readers now than I had when I started this blog:

Dominic developed on schedule - he rolled in all directions, he crawled, he cruised, he walked.  He did have a chronic yeast rash problem even before vaccines.  We delayed his vaccines because our niece nearly died from a vaccine reaction as an infant - so we didn't do any until he turned 2, and then one at a time with a month in between.   Right before his third birthday, Feb 11, he weaned.  Right after his third birthday he started preschool.   In early March we all had a horrible influenza A infection and after 2 weeks of illness/fever Dominic stopped speaking (he had been speaking in sentences), looking at us, started self stimulatory behaviors and lining up toys.  He is 10 now.  We have done the gamut of both biomedical and traditional ABA / OT / ST therapies for 7 YEARS.   This last month is the first time that primitive reflex integration has been on my radar.

I have theorized about viral brain injury multiple times in this blog over the years.  Back in the very beginning my friend who is a PhD Neuroscientist talked to me about Wernikes Aphasia - about stroke like injuries.   Injuries that potentially affected just one side of the brain.  The speech center of the brain is in the left hemisphere.  Dominic's right eye is the one that the optometrist says is weaker... right eye is controlled by left brain.

So.
Back to Thursday's OT session and primitive reflex evaluation.

He has retained the following reflexes in the following manner:
Rooting reflex - retained only on the right side / so left hemisphere of the brain
Palmer Reflex - slightly retained on the right side / left hemisphere of the brain
STNR:  retained on both sides (accuracy questionable)
ATNR- completely retained on the right side
Spinal galant - retained on both sides
Moro - couldn't test well (requires a closed eye trust fall backwards - hilariously they asked another child to demonstrate for Dominic and that other child ended up having a retained Moro reflex.  *facepalm*)
TLR - suspect not integrated but he compensated by sticking his foot out so they aren't sure.


Blink Blink.

Is it possible that he DID integrate them all (some of these if they hadn't been integrated, he wouldn't have been able to crawl and let me tell you this child crawled alot) and then the viral brain injury wiped out that development?  If he had had a left side of the brain stroke, the MRI we had that summer after the regression would've showed something.  So even though stroke would make sense, its not it.  Maybe the virus triggered seizures (and we believe we've seen absence seizures off and on through the years - its been a solid 2 years since the last one and we never managed to catch one on an eeg).,  The good news is we are already doing an anti seizure protocol with the PeaPure which is an anti inflammatory that works on brain inflammation.  Note to self - speak to family doc about a 3 day eeg next time we see her.

So many questions in my brain, but even more - so much excitement because this is now down to how to fix the original viral brain injury.   We're going back to basics with OT.  The new treatment plan is going to be written around integrating all these primitive reflexes.  This will segue beautifully with the vision therapy when we get it started.

And now I've got our regular OT's so excited they are trying to get themselves into some MNRI training classes.  And I may have them now starting all their autism kiddos with a primitive reflex evaluation. 

Here's an interesting side note.  The integration of the rooting reflex is tied to speech and handwriting/fine motor.  All these years we've been starting at the top with those - practice etc  - when really we should've started at the bottom with integrating the reflex before we pushed the practicing part....

No wonder its been so hard to teach him to read, to get him to write, etc.  No WONDER.

And in other news on Wednesday evening we went to an introductory meeting for the cub scout pack that is run by an Autism Dad who we randomly met sledding last winter.  He's the parent of the little boy who really wants to have a sleepover with Dominic.  We got to the parking lot and this happened.  The boys then proceeded to sit next to each other and hang out the whole meeting.  We are going to do a few test meetings, but feel like doing cub scouts could be a really nice social piece for Dominic.  AND they just need a copy of his IEP to allow him to stay in cub scouts a few years longer than usual so he's with developmentally similar children.   I picked up his Webelos handbook on my way home from work today.  We will, wait a week or so for the whole uniform shebang.  And we have to do some creative brainstorming about food.









Thursday, September 3, 2015

Sight Word Practice and random updates

Big thank you to my fellow TeamTMR mama, Sadie, for sending us some cool sight word games. Dominic liked this one enough that we did 14 sheets before he decided he had enough.  I'm very impressed.   We will mix it up, and continue with various sight word practicing every day after school.


In other news, we have scheduled our more in-depth vision testing with Impact Vision Therapy, the clinic Dominic's optometrist runs.  He will have an hour on Sept 14, an hour on Sept 21 and then we will have a parent meeting at which they provide us with a treatment plan on Sept 28.  We expect the actual therapies to start sometime in October, depending upon scheduling. I am entirely willing to pull him from school for this because its too important to not start.

Wednesday, September 2, 2015

Day 5

 ... of almost no TV and no games on the ipad.  School is brainstorming how to incorporate my request for minimal to no computer time.  As I expected its caused a bit of a kerfluffle. 

We did let him watch maybe 15 minutes of his movie this morning while we were getting showered, etc.  Thats it.   He's still trying to download apps onto the ipad, even though he does not know the password.

He is only getting ipad time for the Gemiini app.  He is getting zero television after school.   Ya'll this is a GIANT change for him and he's done pretty well. We are noticing a lot of verbal stimming is back (the dreaded squealing), and I'm hoping that's just a reaction to the routine change.  (it could also be a reaction to doubling his glutathione dose, but I doubt it)

So what are we doing instead?

As we wait for the bus, we are playing catch with a soccer ball while I  either have him count or I sing row row row your boat.  (note to self, find better songs).

After school, he's doing his sight word practice, then going outside to play.  On Wednesdays and Fridays he's then going to Occupational and Speech therapy.  He's actually almost learned how to swing.  He's at least got the idea that he can shift his body weight to make the swing move - we are working on the leg piece.



And he's jumping.  The trampoline is awesome.



He's also doing some spontaneous play outside.  Yesterday he came running in to tell us there were helicopters in the sky.  And there were.  2 of them.  (military doing exercises, I suspect).  So we had him count them and then he went downstairs and got his toy helicopter and was outside playing with it around the deck.



Tuesday, September 1, 2015

Sexual Safety

I know that this isn't usually started for kids until Middle school, but the whole pedophile in the YMCA little boys locker room thing has me entirely on edge.  Yes we talked to the police, No Dominic's picture was not taken, Yes the man was in the little boys locker room the same time as Dominic.   So at our school meeting last week I specifically mentioned writing a personal sexual safety IEP goal for Dominic in the context of if something happened, he is unable to tell us.   The principal is entirely in favor as was the SPED teacher, however they have no curriculum for it as sex ed of any type is a middle school thing, so they asked me to come up with appropriate verbage.

Enter My Village

I posted on facebook, and tagged several moms I know who specialize in this sort of thing and in 2 hours I had a ton of resources.  This post is for me to come back to and use for writing said goal.

My action items:
I need to get my hands on the school districts bullying, code of conduct and sexual harassment policies.
I need to see the districts healthy maturation curriculum

I need to review these links:
http://autism.outreach.psu.edu/sites/omcphplive.outreach.psu.edu.drpms.autismconference/files/43-Presentation.pdf

http://autism.outreach.psu.edu/sites/omcphplive.outreach.psu.edu.drpms.autismconference/files/91-presentationpart1.pdf

http://autism.outreach.psu.edu/sites/omcphplive.outreach.psu.edu.drpms.autismconference/files/91-presentationpart2.pdf

http://autism.outreach.psu.edu/sites/default/archive_files/8._Presentation.pdf

And then I need to craft a goal that includes age appropriate objectives around sexual safety.

And I need to talk to them about a peer buddy.  Particularly as he starts middle school.  Peer mediation is is evidence based (see page 20 of that link), so the school shouldn't balk.