Thursday, April 30, 2015

Medical Comorbidities / Light it up TRUE April 30




In fairness to the medical profession, its really hard to diagnose a person who is non verbal and violent.


If they can't answer questions about symptoms, its easy to assume that they are out of their mind crazy and give them antipsychotics.


In the tragic case of Alex Spourdalakis, a teenager was stripped naked, and kept in 4 point restraints for 19 days in the emergency room with no diagnosis.  It was later learned, through a diagnostic colonoscopy, that his gut was riddled with abscesses.  He was in AGONY.  He was non verbal and had no way to express pain other than violence and self injurious behaviors.  The hospital refused his mothers request for a colonoscopy and instead administered antispsychotics.  A few months later, his mother and godmother allegedly committed murder  / attempted suicide because they had no support.  It is incomprehensible to me, and I will never stop telling people Alex's story.


When I told our MD about Alex,  she nearly cried.  And she promised to back us up if ever we needed to do inpatient with Dominic and he couldn't verbalize his symptoms


Our kids are riddled with illness.  And because they are non verbal and cannot explain what they feel, that physical pain is written off as mental illness and they are given antipsychotics.  This is unacceptable and must change.


The way we change it is one conversation with one doctor at a time.   Have you spoken to yours?

Wednesday, April 29, 2015

Mortality / Light it up TRUE April 29




Whether its from wandering, or seizures or being murdered by a caregiver... the numbers are insane.  I don't believe that these study results are incorrect. I believe they may actually be on the optimistic side.



Tuesday, April 28, 2015

He's a Runner / Light it up TRUE April 28



When Dominic was in preschool, I remember the special ed teacher who did home visits describing him as a runner.  It was in his IEP for years that an adult had to be within 1 foot of him at all times.  Because he was a runner.


For the longest time, if you chased after him, he ran harder.  He thought it was a game.


It was only last year that school started allowing him to go for recess with his para inside watching from the window.  He still has para eyes on him at all times.


I remember one time at Alpine, another child eloped.  It took the therapists over 45 minutes to round that child up.  Things that  NT kids respond to - verbal commands specifically, autistic children do not respond to.  Its very scary.


Its been a long time since Dominic eloped.  We still take precautions. I'm not sure when we will stop those.

Which all reminds me, i need to chase down then gps device we are (still) waiting on. 

Monday, April 27, 2015

IonCleanse by AMD Month 4 results: AWESOME

.... which i'm posting early because I'm going to TACA in Philadelphia the end of the week and I wanted to sit and document this before I went.  Remember, we only just added in new supplements within the last week, so overall, our supplement regime has gone DOWN in the time that we've done footbaths.  We stopped the CD protocol and Endurocell protocols both during our time on footbaths.  The progress is AMAZING.

Month One Gains
Month Two Gains
Month Three Gains


While this blog has primarily been dedicated to the Autism Action series of memes, Light It up True, I've been keeping track of neat NEW things.

Temperature Sensitivity
The biggest new piece in Month 4 is that Dominic now has temperature sense.  What I mean by this is he's now telling me his bath is too hot, "mommy FIRE, need cold", or too cold.    He's 10 and this is the first time I've seen him express temperature awareness.  He's always been the kid who insisted on 100% hot water in the tub (we had to turn down the water heater ages ago because of this)

Bigger variety of appetite
My kid is a great eater.  Always has been.  Blows people away.  He's getting even better.  Here's an example - we went out to dinner last week and after eating his entree, Dominic reached over and slid his father's salad (yes, I said salad) over in front of him and started eating it.  The look on Rod's face was priceless.

Broader with affection
We have a friend who has babysat for Dominic since he was in diapers.  She's now in her mid-20's and just bought a house not far from us and stopped by just to say hi the other night right as I was putting Dominic down for bed.  He hadn't seen her since Christmastime. As I finished our bedtime routine,. he looked me right in the eye and said "want kiss Julie".  Needless to say, I sent her downstairs to tuck him in before she left.

Extremely well behaved in public
I cannot remember the last time he had a melt down.  We had out of town company the weekend of the 18th and went out to dinner with them.  My friend Robert remarked that "even for a kid with no challenges, he is amazingly well behaved in a restaurant".

Helping more
Helping cook, helping protect Shanti from the Big Oaf otherwise known as Kama the puppy,  helping put his backpack together for school.

WRITING!!
This was a facebook post of mine on April 6, from when we had gone out to dinner.
"Dominic was trying to say something and we couldn't figure out what it was, so I handed him a crayon and he LEGIBLY wrote "Red Fish" on his menu. He was trying to say Red Fish. Blew my mind on a lot of levels."

He's retaining really cool information.
Remember the field trip he went on?  It was to a place several hours away called "Bent's Fort". 
This is the email that I got from his SPED teacher April 24:  "Today Dominic found Bent’s Fort in the history book and he said “Field Trip”. That was exciting because he was just leafing through the book on his own. He is enjoying spending time with his classmates. They’re doing a poetry book and he is fully participating. Ask him about Emily. He is writing his poems and is so proud and now they’re typing them. He is using his peers to model after and it’s so interesting"

Skill generalization
He took tying his shoes and turned it into tying a balloon around his MeatLug dragon after he watched the movie Up.  He was very disappointed when Meatlug didn't fly away.

~~~~

And a followup on me.  I've been cleansing right along with Dominic.  Every year in April, we walk a 5K for Alpine Autism center.  Every year I end up getting overheated / kidney strain from the walk (exertion + sunshine = throwing up).  I didn't this year.  Not even a slight headache.  We even went to a baby shower an hour later.  amazes me.

Month 4 ends our participation in the study. I will be doing a final ATEC in a few days - while speech is slowly increasing, I'm not expecting any more points down.  We will be keeping the IonCleanse by AMD in our arsenal forever. I'm never going to be without it.

Elopement / Light it up TRUE April 27




When we did our initial intake interview for Dominic to get the Medicaid waiver that he currently has paying for his occupational and speech therapies, one of the questions that the nurse asked us was this:


If Dominic was lost in the grocery store could he give his name, his parents names, and a phone number to a stranger.
The answer then was no.
The answer is still no.


There's a reason why all our locks are keyed deadbolts, and why we keep them locked at all times (we are half a block away from a major city thoroughfare).  Remember when he opened the door for the fedex man a few years ago and scared us out of our minds?


And a reason why he is never permitted to be in the front yard unless we are transitioning from house to car or vice versa.


Why we don't ever allow him out more than about 10 feet away from us when we are places like the store or the zoo.   Why he qualifies for door to door bus service from the school district.

He would be unable to provide basic identifying information to a first responder.  He likely would be terrified by a first responder.

Sunday, April 26, 2015

Death from Restraint and Seclusion / Light it up TRUE April 26








This piggybacks on yesterday's blog.



Its unacceptable in my mind that any practice in schools which has caused death is not outlawed at a federal level.


Can you imagine the absolute terror of a child, who is being restrained with adult lying on top of them, so heavy that the child cannot breathe?  Can you imagine their last gulping breaths as their ribs break?


Unacceptable. 


If your child is in a school that practices restraint and seclusion, I encourage you to find a different school immediately.

Saturday, April 25, 2015

Alpine 5k

Today we walked in the Alpine autism center 5K run for the one walk. This year was dedicated to my friends son who died in February, without whom Alpine probably wouldn't exist. There was no stuffed  armadillo this year, but Dominic did get to see several other costumed adults. He particularly enjoyed giving Wolverine a high-five. We took Shanti with us this year like we always have and he did great.   Kama is recovering from his neuter appointment so was not taken along.

here are posts from previous years, so you can compare.  Dominic is growing like a WEED
 


 In no particular order here are some pictures from the day
Family after picture



Mom and dad after picture


I think he was looking at a helicopter in the sky here but I'm not certain.



Sunglasses are cool, Yo



Every year we do this


This is one of our favorite people. She brought her family along with her to walk with us and it was delightful.


And this is one of my friends who came down from Denver to walk with her family, we know each other online as she's been one of the footbath study participants. She's got two little boys and they're doing fantastic with the ioncleanse by amd protocol.


Dominic ran the kids race team finished in the first third of the pack. He was awfully proud of his finishing medal 


And this was our family before walk picture.

Restraint and Seclusion / Light it up TRUE April 25



Its very sobering to leave your 4 year old in a therapy center knowing that they will restrain him if he misbehaves.  They didn't until a month or so before we stopped attending that center (and I witnessed it and nearly lost my mind), but the knowledge that they could was deeply disturbing.  They would have done it to protect him from himself and to protect other children from him, but still - deeply disturbing.


The alternative school that is in our city has seclusion rooms.  They are about what the sound like - and they made me queasy when I saw them in a tour.  They are small, padded rooms with no doorknob on the inside and no furniture.  Children having meltdowns are placed in the rooms, alone, until they can calm themselves down.


Dominic, to my knowledge, has never been restrained or placed in seclusion in his current school district placement.  In fact, the one time I insisted upon a behavioral plan (to protect him), the social worker couldn't find any behaviors to mitigate after observing him for a month.


The use of restraint and seclusion is controversial and I believe inhumane. There are regularly videos of children being abused by teachers/para's who are "restraining" them fairly violently showing up on the internet.  I would be in jail if anyone did that to Dominic.   There are children who come home with unexplained bruises - non verbal children who cannot tell their parents what happened.   Our children are not animals, they are physically ill.  They are having meltdowns because they are in pain, overwhelmed, and it is simply the only way they have to communicate their needs.

Friday, April 24, 2015

Epilepsy / Light it up TRUE April 24




When we were getting ABA therapy, one of the things we suspected was that Dominic was having absence seizures.  We tried to pin them down, but the eeg that the Neurologist had us do was only 20 minutes.  In hindsight, I wish we had demanded a 24 hour eeg.


We have seen what we believe is an absence seizure as recently as about a year ago, when Dominic had a stomach bug.  He totally zoned out - we couldn't get his attention, his eyes went fixed point.  Then he threw up.


So I still think we have seizures.  They just aren't formally diagnosed.  that makes me want to work even harder to clear Dominic's system out with the IonCleanse by AMD foothbaths and to support his specific genetic mutations.  I believe we can avoid the seizures getting worse if we mitigate the toxins that are built up in his system.


When he hits puberty, Dominic has a 25% chance of developing full blown epilepsy.  that many boys with autism develop seizures at puberty.   Seizures can be deadly.  I get so angry when I read bloggers who talk about their child's epilepsy as just another feature of autism, a miswiring.   Seizures are a true medical event - they are not a personality quirk.

Thursday, April 23, 2015

that was adorable

Random moment last night.,,,,


One of Dominic's regular babysitters stopped by to say hello (she's just bought her first house and its not far from us).   He was on his way to bed so saw her briefly.  When I got done tucking him in, he said to me "want kiss Julie". 


Needless to say, I sent Julie in to tuck him in before she left.

Autism prevalence / Light it up TRUE April 23



... so where is the outrage?  Where is the questioning as to why?  What happened to our culture that we've allowed ourselves to be brainwashed with blue lightbulbs that its "just better diagnosis" and that its "just their personality"


I'm almost 40


When I was in high school in the early 90's, there were no children with Autism there.  Downs, CP, Spina Bifida - yes.  Autism - no.  In a high school of ~700 students, there was one special ed classroom with half a dozen students, mostly in wheelchairs.


Where were the non-verbal 10 year olds in diapers?
Where were the children smearing feces?
Where were the children who bit themselves until they bled, who ate their shirts (literally). who hit their own head on the wall until they went unconscious?
Where were the kids having siezures every day?
Where were the children wearing helmets?
Where were they?


They weren't is the answer.  I promise you, we are not stupid. We, as a society, would not have overlooked such extremely unhealthy kids.


I know I have close friends who are part of the neurodiversity movement - who believe that their child's autism is just a personality trait.  I watched Dominic regress.  He was fine, speaking in sentences, and then he wasn't.  I know that my child suffered an injury.  I do not for one moment believe that his medical injury is a personality trait.


I do believe that we as a society are de-evolving because of environmental toxicity.  We are getting sicker every generation.  Autism is a sign of that.  I believe that the vaccines given to my parents generation and my generation, in combination with the surge of over processed, genetically modified foods that are nutritionally void is actually altering our genes.  We are changing our own species DNA.  And if we don't stop it fast, we will kill ourselves off within a century.


In case you missed it, I was published over at the Thinking Moms Revolution yesterday about this very thing....


Wednesday, April 22, 2015

$3.2 Million / Light it up TRUE April 22





... .and do you know who is going to pay for the majority of that?  Tax payers.   Disabled adults are given a social security disability check every month.  Its not enough to live off of, but its guaranteed to them from the government if they are defined as unable to work due to their disability.



think about that.


Think about the number of disabled adults who are going to break the system?


Where will the money come from?  Will it run out?  What happens when it runs out?  Private insurance won't cover adult children after age 25 - so they will have to go on Medicaid.  they can, because they're disabled.   Again with the taxes paying for them.


What happens in 2050 when, potentially, disabled, non-taxpaying adults outnumber taxpayers?


We are not ready.


If you are still lighting it up blue and pushing acceptance, you need to look at long term projections.  And act.


Stop buying GMO;s.
Insist that companies use natural colorings instead of artificial.  Better yet, stop buying processed food and cook from scratch. Its not rocket science.
Overthrow the CDC and Monstanto
Stop vaccinating.
Stop giving your family Tylenol - its horrible.


Insist that your legislator be informed about GMO's and the fraud ridden relationship between the CDC and pharmaceutical industry.  Get them to do something about it.

Tuesday, April 21, 2015

Autism underemployment / Light it up TRUE April 21





This goes with the territory of having an intellectually disabled adult child. There aren't very many places that they can earn a living.  There are places like Goodwill and the Arc.  I'm sure that as our kids get older, those jobs will be heavily fought after. 


I've written before that I expect Dominic to live with me for the rest of my life.  I would love to be proven wrong, but I don't want to put him in a group home or adult day care.  I need to start thinking of a creative solution that would allow him to earn a living. 


If you are an entrepreneur, now is the time to start creating employment opportunities for disabled adults.  There is going to be a tidal wave of them very soon.  They need to be highly supervised positions with great structure.  They need to be positions where dignity is maintained.   They will probably not be highly paid positions, but they should be fulfilling jobs.  Our kids deserve to have fulfillment in what they do.


For Dominic, as he gets older, we continue to see his love of animals.  When the time is right, I'm planning on speaking to our veterinarian who we've known for a decade about possible volunteer puppy petting position that could perhaps grow into a paid position.   there's probably something similar that could be done at the zoo, but I would have to be very comfortable about the level of supervision.

Monday, April 20, 2015

A mid month Dominic Update and random blatherings.

I know I've been so focused on Light It Up True this month that I haven't given you very many Dominic updates.  So here's my effort to do that and share some anecdotes.

Overall he's doing awesome.  School continues to see growth in independence as do we at home.  That frequently looks like back talk and sass, but you know what - he's 10. Sass is totally age appropriate.

He is talking more.  A lot of it, we are learning, is habit of only speaking in one or two words.  We are having to force it, but when we force him to use a whole sentence he will.  He is using new words too - the other day he told me about the costumes that Dora was going to get for the pirate ship.

He's doing great with technology.
For example.  Friday morning there was no school because it was a planned teacher work day.  So I let him hang out in his pajamas and eat breakfast in front of the TV while I came upstairs and worked.  He came up and asked for help with 102 dalmations (which we keep on the DVR for him) and so I went downstairs.  Turns out he'd deleted it.  And was distressed I couldn't find it on the on demand feature.  So we turned on the Wii, signed into netflix on demand (well, i pointed to where he should click and he clicked because that wii remote is way too sensitive for me), we found the movie (he was spelling it out, without help) and he happily watched it.

Last week was the field trip we asked if he wanted to go on a while back.  We talked with his teacher in advance and sent him with $20 to spend in the gift store.  They brought his calculator and helped him ensure he didn't over spend.  Unsurprisingly he brought home a tube of animals and a playing card deck also with pictures of animals. And he spent a little over $18.  He apparently did great on the 2 hour each way bus ride (we did send an ipad, but he only used like 12% of the battery so it doesn't appear he used it much).

He is such a happy kid.  Its rare anymore for him to be sad / tantrum, etc.  I cannot remember the last time he was down in the dumps.  

The ioncleanse by AMD footbaths continue to rock our world.  We actually blew the fan out of our machine over the weekend and they overnighted us a new one.  I was out of town on business and went a full week between cleanses myself.  NEVER doing that again. I feel so much better when I cleanse at least every other day.  They relax me enough that I fall asleep in the chair while I do them.

We got back the genetics reports for both Rod and I and what do you know, both of us are genetically worse off than Dominic.   Genetics may be the loaded gun, but there is no denying that environment pulls the trigger.

We had out of town friends come visit over the weekend ~ they were here last in early November.  When they arrived, Dominic RAN to the door to open it and started telling them all about whatever toy he had in his hand.  And then he spelled for them, repeatedly.  They were blown away and told us how amazing they find it that he is making such notable progress every time they come visit (its about 3x a year).  We went out to dinner, and Robert's comment was "you know, even for a kid without challenges, he is really well behaved".

Dominic got really hungry Saturday afternoon, and I was late in putting together lunch. So he asked for an apple.  And I told him no, he'd need to wait for the turkey salad I was putting together.  He got sad, and I told him that perhaps if he helped it would be faster.  And he - for a brief moment - helped me strip cilantro leaves off the stems. It didn't save any time, but was huge and a first. 

And, because i'm running one every day, here is todays #lightituptrue Meme from TMR


Sunday, April 19, 2015

Autism Rates / Light it up TRUE April 19



It takes a lot to scare me anymore.  This one scares me.

If this is the case, as MIT researcher Stephanie Seneff has hypothesized, we are completely screwed as a society.

It means that in 2030 half of children starting kindergarten will require special education support or alternative placement in a therapy center.  At our elementary school, there is 1 special ed teacher for the entire building. If you're looking for a new career, special ed teacher is not going to go away any time soon, and neither will ABA therapist.

It means that in 2035, half of children age 10 could still be in diapers and non verbal, wearing helmets, and unable to stop stimming. Medicaid is already trying to reduce the amount of coverage the provide for diapers for older children / adults

It means that in 2041, half of the 16 year olds won't be getting their drivers licenses... won't be getting used cars.  They will require transportation to and from places for the rest of their life.  Adult Special needs bus service is also a field that isn't going to go away soon. Goodwill and the ARC jobs will be fought for.  They won't be going on first dates, to prom, or worrying about accidentally getting pregnant.  They will have gps trackers probably implanted to keep them safe.  Bars on windows and keyed locks on all doors will be the norm. 

It means that in 2043, instead of graduating from high school with prospects of college, a military career, or a civilian job, fully half of the population that age will need to be taken care of  with a level of supervision that could require 1 on 1 care.   There won't be anyone to take care of senior citizens any more because everyone will be taking care of disabled young adults. They will need help toileting, they will need help to avoid wandering/elopement, and they will need help eating.  This is the ones who survive, who don't die from wandering and drowning, or grand mal seizures, or abuse from school/caregiver inappropriately restraining them,  or at the hand of their own parents.  All of those happen with appalling regularly already when the rate is  only 1 in 68.  How often will they happen when it is 1 in 2???



It means that in 2052 half of the population of 28 year olds won't be married having children, they won't be paying taxes, they won't be defending our country.  They will be living on social security disability, in adult day care programs, and living in group homes. They won't know how to balance a check book, cook a meal, or how to tell someone their phone number.  The waiting list for services, which for us was 6 years, will probably stretch decades.  Who will feed these disabled people?  Who will house and clothe them? 


Are you scared yet?


Saturday, April 18, 2015

Vaxxed vs. Unvaxxed / Light it up TRUE April 18



Of course there isn't a study on vax'd vs. unvax'd health outcomes in the US. To do such a study would be to
1. Admit that there's a population of unvaccinated children in the US who could be healthier than vaccinated
2.  Find someone to fund it (pharma sure won't)
3.  Actually question the machine.


The CDC maintains it would be unethical to look at unvaccinated children, overlooking whole populations like home schoolers and the amish who don't generally vaccinate.  Its very easy to follow the money when you look at the level of inbreeding between the CDC and pharmaceutical industry.

Generation Rescue did a phone survey in 2007... and what do you know, unvaccinated children actually are healthier than vaccinated.  This is some of what they found:

The most notable results of our survey are with the boys, which is not surprising considering boys represent approximately 80% of total cases of NDs. Namely:
All vaccinated boys, compared to unvaccinated boys:
- Vaccinated boys were 155% more likely to have a neurological disorder (RR 2.55)
- Vaccinated boys were 224% more likely to have ADHD (RR 3.24)
- Vaccinated boys were 61% more likely to have autism (RR 1.61)
Older vaccinated boys, ages 11-17 (about half the boys surveyed), compared to older unvaccinated boys:
- Vaccinated boys were 158% more likely to have a neurological disorder (RR 2.58)
- Vaccinated boys were 317% more likely to have ADHD (RR 4.17)
- Vaccinated boys were 112% more likely to have autism (RR 2.12)
(Note: older children may be a more reliable indicator because many children are not diagnosed until they are 6-8 years old, and we captured data beginning at age 4.)


While we're at it, you should take 20 minutes and go listen to Bobby Kennedy talk about this - he was speaking in opposition to a bill in California just a few weeks ago.   His youngest children got *69* vaccines each. Compared to the 5 that he got and the 22 that his eldest children got.   Something is rotten. 



Friday, April 17, 2015

VAERS underreporting / Light it up TRUE April 17




The system is broken, that's all there is to it.

Doctors are not looking for reactions because they have been taught they are rare.  Doctors don't have fliers with VAERS information when they give a shot. Could you imagine your doctor saying "Now, if you have any reaction, here's the place to report it, and don't hesitate to go the the emergency room if you are concerned".  No one would get shots if they knew what we know....

#parentsdothework



Thursday, April 16, 2015

Biomed / Holisitic Healing - Light it up True April 16




I remember when we came back from the Neurologist appointment and went to the pediatrician for the last appointment we ever had with him. I had that prescription pad note that said "Autistic Regression Syndrome".  I told the pediatrician we were going to see a DAN Doctor and his eyes rolled back in his head with so much verve that he looked like a slot machine.   He then proceeded to tell us that Gluten free diets were not shown to help anything except maybe Celiac disease and the only thing we could do was ABA therapy - but we'd never be able to afford it and insurance didn't cover it.

That was our last appointment. We never saw a reason to go back.

And - the gluten, casien, soy free diet has been our mainstay. Dominic has been on it now for almost 7 years. I can cook GFCFSF with my eyes closed.  Its so not a big deal. Of all the things we've done, its the least expensive and most controllable.  its such a hard thing for newly diagnosed parents to wrap their head around, expecially if they are convenience food types, but I promise it becomes simple.


And, by my own stubbornness, I did get insurance to cover some of the ABA therapy, and we had very generous angels who helped us along the way, we did a  lot of fundraising, and I learned to stretch a dollar until it begged for mercy.

The whole body approach - diet, treat/manage pathogens, appropriate nutritional supplements, detoxification protocols - that has been our life the last 7 years.  Dominic's not out of the woods yet - but we can see the edge of the trees.  I have been tempted many times to send a nasty letter to that pediatrician, but perhaps instead I'll send him the TeamTMR book. 

Wednesday, April 15, 2015

Institutionalization / Light it up True April 15



This terrifies me to my core.  This is why I won't give up.

I absolutely cannot wrap my brain around institutionalizing Dominic.  I know people who have had to do long term inpatient commitments on their autistic teenagers and its broken my heart to watch.   I expect that Dominic will probably live with me for the rest of my life.  I don't know where he'll go after that. 

There aren't anywhere near enough facilities for the tidal wave of autistic teenagers and adults who require full time, one on one supervision.   We, as a society, have no idea whats about to hit us.  If you're the investing / philanthropic type - take a page from the Autism Trust in Austin, TX and build an intentional community. I guarantee you that you will have a waiting list within days of announcing the idea.

Tuesday, April 14, 2015

"Eating butter"

I made Dominic a peanut butter and jelly sandwich on gluten-free bread and sectioned him an orange this evening. Then I went downstairs and got on the treadmill to do my workout. Midway through my workout Dominic came halfway down the stairs and said "mommy eating butter," which is his way of asking if he can have some peanut butter. I hope he never outgrows this one because it's adorable.  I said thank you for asking and yes you may have some. So he proceeded to get the jar peanut butter in a large spoon and bring them downstairs so that I could supervise him scooping the peanut butter out of the jar. Cutest thing ever.


Caregiver Fatigue / Light it up TRUE April 14




Its no surprise that I've struggled with my own health the last few years.  I've had a trip to the hospital, a lot of fatigue, and seem to get sick at the drop of a hat.  Knock on wood this is getting better now that I'm also using the IonCleanse by AMD , but caregiver fatigue is a huge thing in our community.

First, we have the PTSD around our child's regression - as I said yesterday, it is SOUL SUCKING to watch your child fade away from you.  You dream about what they were like before and you grieve all over again.  Then we have the guilt - over being the one to approve that vaccine, or the one to push preschool where he got the flu that was our back breaking straw or that if you had breastfed longer maybe he would've had the immunities he lacked...  Then we have the compulsion to never stop searching. I cannot tell you how many lunch hours I spent (and still spend) reading medical studies that might give me a clue as to what to do.  How many evenings after bedtime I continued reading studies.  Then we have the constant level of hyper-supervision our children require round the clock.  Having a child with autism is for many equivalent to having an 18 month old - no impulse control + big enough to unlock doors, etc is a very scary thing.  Remember the time Dominic played with fire?  I do - every time I cook.   Then there's all the assholes that we have to deal with on a regular basis.  I've gotten a lot more in your face with those kinds of people, my current favorite response is "Welcome to Autism".  Most of them don't know what to say to that. I've also said "yeah, this is what happens when you vaccinate", which also makes people twitch.  I do practice these in front of a mirror so they roll right off my tongue.   We have to be so tenacious there is rarely a moment to rest.

My therapist tells me that my level of "anticipatory anxiety" is off the charts; comparable to her military veterans who saw combat.   I have it easy compared to some moms I know.  I've never considered killing my child/self because I had no support

So how do I mitigate my exhaustion and manage my stress / anxiety levels?  With the most astonishing support community I could have ever imagined.  Granted - its primarily virtual, but its global.  Anytime day or night, I can find someone online to unload on.   I have met the best friends of my life doing this work, and I now make time to go see them regularly.  Whether at a conference or just to visit, I make that time.

Monday, April 13, 2015

A Dominic update amidst April's Light it up True Campaign

Dominic is doing great.

We are continuing to see steady little things improve with the IonCleanse by AMD footbaths.  The most interesting new thing of late is that he's started telling us when things are too hot and too cold.  Its like he's gotten a temperature sensor tweaking which is random and cool.

His teacher sent a note home that he is SOARING in doing thing independently.  Which makes us happy.

I was out of town for a few days last week on a business trip and I got a text from our Occupational therapist while i was gone saying that Dominic had done the below magnetic mosaic, matching colors to numbers and was  SO proud of himself. 




Last night when I got home from my trip, he was completely compliant, turned the tv off and started his bath when asked. All we really have left to get to is verbals, and they are coming.  This morning he wanted ice cubes in his veggie juice and asked me for them.  We are so close I can see the light at the end of the tunnel!




Regression / Light it up True April 13



I will never forget the first time I heard the words "autistic regression syndrome".  Well, actually, I didn't hear them.

We had gone to our first pediatric neurologist appointment, armed with a timeline of what happened, having had a 20 minute eeg, and hoping for answers.  What we got instead were those three words, written on a prescription pad.  He didn't even say them.  What he did say what that this was a phenomenon they were starting to see a lot of and no one in the neurology field could figure out why. 

At the time, our insurance would not cover anything for an autism diagnosis, so I begged him to change the diagnosis to Aquired Aphasia which got us some insurance coverage for a little while. 

We left that appointment with no resources.  No support.  No direction.  Nothing.  We came home and both sobbed.  I was so rattled after leaving that appointment that this was all I could write.  The pediatrician disagreed about IVIG, and in hindsight I'm glad because I don't think that was the answer then or now.

It took me about a week, and I got my hands on Jenny McCarthy's book Mother Warriors.  While I cried my way through it, that book put steel in my spine like nothing else could have.  It prepared me for a marathon.  Even though in my head I was convinced he would be recovered and neurotypical by kindegarten, I think I knew we were in for a long road.

Now, reading the stories of my co-authors at TeamTMR, I know we were far from alone.  *All* of our stories are the same - our kids were fine, and then they weren't.  A whole generation of parents does not have defective parental instincts and its insulting to say that we just didn't notice the issues until the regression.  Its also insulting to say that we are imagining the regression. In the grand scheme of things, because we waited until Dominic was 2 years old before we started shots (due to a nearly life ending reaction by our niece), his regression at 3 is considered a very late regression.  Its also much harder to deny a child that was one day speaking in sentences the next was incapable of forming words.   We were not alone in seeing the regression - easily a dozen mom friends of mine remember pre regression. 

I'm here to tell you there is nothing more soul sucking than to watch your child fade away before your very eyes. 

Sunday, April 12, 2015

The sicker they are.... the sicker they are / Light it up True April 12



Basically - the more severely autistic a child is, the sicker they are.  And the sicker a child is, the more autistic they are.


Even at the Very First DAN appointment so long ago, we were talking about how overly toxic Dominic's system was.  I remember vividly the nutritionist stopping the Doctor, pointing to Dominic who was draped over a footstool and saying "Doctor, he's posturing!"  He had a bloated belly, and sunken eyes.  He wasn't sleeping well.  He was in a cloud and we couldn't reach him.  It was awful.  His ATEC was in the 90's.


I knew way back then that he was sick...  But I didn't know until we did the CD protocol how many pathogens he actually had to fight. It was the CD protocol that knocked back all those layers and now the IonCleanse by AMD footbath has created the detox pathway he never had, so we can start addressing his actual core issues.

Saturday, April 11, 2015

More MAST Cells //Light it up TRUE / April 11



Mast Cells are so 2010. We talked about this yesterday


Really.  We've been down this road, got the tshirt and sold it. Why are we, 5 years later, even having to educate people on the linkage between Mast Cells and Autism?


Basically, they are an indicator of immune response.

I remember asking all sorts of people about MAST cells and how they worked. I'm blessed to have a community of medical folks that I know personally who put up with my ridiculous questions.

Friday, April 10, 2015

Mast Cells / Light it up True April 10



There is no way to say this other than there is a subset of the population that is genetically predisposed to be environmentally injured.  Mast cells are another flag.  Its a chicken/egg discussion tho - do the increased mast cells come before the injury or are they a result of the injury.  And why aren't we screening for this?

The Autism community knew about this 5+ years ago. I wrote a blog in which I mentioned it...  We went on one of our better tolerated supplements as a result of that - neuroprotek.  We had to stop it a while later as it became cost prohibitive to use the amount required.

Thursday, April 9, 2015

Allergies / Light it up True April 9




Allergies are a sign of an overactive immune system.  As we talked about yesterday, what do vaccines do?  They trigger an immune response.  Which in turn, in susceptible children, triggers all sorts of things.


Why do you think that most elementary schools don't allow peanut butter anymore?  Where were the anaphylactic ally allergic kids 30 years ago when we all ate PB&J for lunch?  Those allergies are compliments of vaccination.

Wednesday, April 8, 2015

Auto immune family history / Light it up True April 8




Well, lets see... family history of thyroid disease, cancer, psoriasis, lupus...


And that's just on the maternal side. 


This is truth. Pediatricians and family practitioners who see babies for vaccine visits should be at the very least screening out children with a family history of autoimmune disease.  Better yet, they should be running full on genetic mutation panels before ever administering a shot.   That means they'd have to admit that there are children genetically prone to being harmed by vaccines, tho, and we all know that won't happen.


Parents, you know your family history. if you have ANY autoimmune disease in your family, odds very good that you've got genetic mutations that could make your child susceptible to vaccine injury.  BECAUSE - how do vaccines work?  They work by over stimulating the immune system.  Over stimulating the immune system can kick off an autoimmune response.


We delayed shots until Dominic was 2 because our niece had a nearly life ending vaccine reaction.  Had anyone told me in that time that my family medical history meant we should never get them, we would've never gotten them,. My gut screamed at me not to get them at all, and I ignored it because I thought I was doing the right thing for my child and for society. 


He will never have another shot again.

Tuesday, April 7, 2015

Poop / Light it up True April 7



Toddler Diarrhea?  There's no such thing.  Its not normal for your 3 year old to be incapable of producing a formed stool.


Constipation?  Not normal.  Babies and children should be eliminating multiple times per day.



When Dominic was a newborn, everyone told me it was perfectly normal for him to only poop one day a week. Granted, that day, he went throught A  LOT of diapers.   Its not normal.


He had one of the worst every diaper rashes we'd ever seen. It was yeast. It was cracked and bleeding.  No one told me that cracked and bleeding on the outside meant cracked and bleeding onh the inside.  No one told me that I could see the ACID eating through his skin with every bowel movement - that the same acid was also eating through his gut. It took years and a stool test by the DAN doctor to confirm red blood cells in his stool - indicative of leaky gut syndrome.

Monday, April 6, 2015

Thats because Autism is Medical / Light it up True April 6



Autism is NOT a mental health disorder.  No matter what the DSM says.  Our kids are physically ill. Their mitochondrial DNA is mutated in such a way that they cannot function.  How society says this is just their personality or just their behavior is beyond my comprehension.


The grander implication is that there is no such thing as a mental health disorder.  That underlying every "psychiatric" condition is a true physical one.  Chew on that for a while.  That means entire industries are irrelevant at best.


I have heard it said, I believe by another warrior mom, that the field of psychiatry has set medicine in our society back a hundred years.  And to that I agree whole heartedly. 

Sunday, April 5, 2015

the MMR is Deadly // Light it up True April 5




Have you heard much about mickey mouse measles gate lately?  That's because there's really nothing to hear. The "epidemic" quietly died off.  No children died.  No children were permanently disabled.  A number of children got lifetime immunity out of the deal.   In fact, there hasn't been a death attributed to the measles virus in the US in at least a decade. In fact, there never really were very many deaths attributed to the measles.  Lovely work done over here around that.


Did you know that's not the case with the vaccine.  That there are in fact children who die from the Measles vaccine?  Every year. 


Did you know that measles is a rash and a fever, generally milder than chicken pox?


When I was pregnant with Dominic, my midwife told us the that MMR vaccine and the Chicken pox vaccine were created so that parents wouldn't have to take the time off work to appropriately sequester and care for their children with rashes/fevers.   They are economic vaccines, not vaccines that we have to give or we will die a horrible death from a virus. 

Saturday, April 4, 2015

VAERS / Light it up TRUE April 4



Did you know that there's a national database dedicated to keeping track of all vaccine reactions?
Did you know that if your child has a documented reaction of any sort, your pediatrician is supposed to report it to VAERS?


Did you know that its is estimated that only about 1 % of vaccine reactions are actually reported to VAERS?


When we finally traced back Dominic's regression and realized that with only 1 MMR, he was hyper immune to measles (to the point that medical professionals were asking me if he'd actually HAD them and we'd just missed it. How do you miss your kid being covered in a red rash???), no one said anything about reporting it to VAERS.  I don't know if anything would've changed if we had reported his vaccine injury.  By that point we were already outside the statute of limitations to consider a case in vaccine court.  (which is a whole different topic you won't want to get me started on).


I still stand by that crazy theory in the above link, by the way, though the rash on his arm at that time turned out to be ringworm.

Friday, April 3, 2015

Hep B / Light it up True April 3




I am so glad we had a midwife when I was pregnant.  While I did end up transferring and delivering in a hospital, we had a plan for just that potential.  Included on that plan, with sign off by a pediatrician in advance (after we interviewed several until we found one that we could work with) were:
No Eye ointment
No Hepatitis B shot
No Circumcision


Then after Dominic was born, he was never left without one of us. Purposefully.

Our pediatrician believed that the eye ointment as a standard of care would probably be gone within a decade. Canadian pediatricians say it doesn't work.   It is still standard of care, and in some states they call CPS if you decline.   I remember as we were leaving the hospital, one of the nurses said to us "when are you going to do his circumcision", and I said "we're not Jewish and there's not a good medical reason to do it" and she turned three shades of red while another nurse (from England) chuckled in the background. 


The hep B shot, though, I'm SO glad we knew enough to put in writing that we didn't want it.  Studies now show that the Hep B Shot in Boys is linked to a three fold increase in autism.    But we still give it.  AT BIRTH.  Explain why are we vaccinating babies for a disease that sexually transmitted and blood borne?  That made no sense to me then and it still doesn't.


Today, we know that the Hep B vaccine is linked to a ton of problems, including SIDS.   Parents, do the work.   And call your legislator so you don't lose the right to make health care choices for your family. 

PS - i'm also over at TMR today talking seasonal allergies and the nonverbal child....

Wednesday, April 1, 2015

Autism Speaks Budget / Light it up TRUE April 2




Autism Speaks spent $4.6 million on family services (4% of their budget) in 2013.  In that same year, they gave $5.5 million in grants to institutions who have members on their board.


Something Stinks.  And its not a crapisode.   Because we don't have those anymore. :)



Seriously, folks, if you're looking for a way to support an autism family try something of this nature:
- Send the parents out on a date night - give a gift card for dinner and a movie and offer to babysit.
- Bring over a meal (ask about special diets first)
- Make a donation to an organization that helps kids and families.  Locally in Colorado Springs, Alpine Autism Center does great work - and we are walking as a family in a  5K to support them the end of the month.  You can sponsor us here
- Make a donation to TeamTMR.  100% of the funds given to TeamTMR go back to families in the form of grants.

Light it up TRUE





I have made no bones about the fact that Autism Speaks does not speak for us.  And that I will never be one to light it up blue. For those of you who are new readers, you can see why in some of my previous posts


Their track record has not improved much from 2013 when I looked at their taxes.  They currently are spending about 4% of their budget on families. 


Its been almost  one year since I joined up with TeamTMR , the non profit arm of The Thinking Moms Revolution and in that time I have been consistently impressed with how my colleagues in TeamTMR GET STUFF DONE.  You want world peace and a balanced budget - set these ladies on it.  It will happen.  At the state and federal level, these women are lobbying to ensure we retain our rights as parents, speaking to boards of aging geneticists who are shocked at the impact environment is having on our children, changing policy in corporations... its ASTONISHING.  I am honored to work with them.


This spring, a few of us decided that instead of lighting it up blue, we wanted to Light it up TRUE.  Its been a team effort, but every day in April, we will release a meme with a fact, appropriately source referenced (you wouldn't expect any less from a project of The Thinking Moms), with a fact about autism.


I will be running a blog every day this month around the days Meme and how it relates to us in our journey. I hope you'll take the time to read back to the links I provide that tell the tale of our journey thus far.  It's amazing to me how many of these random quotes apply to us.  Please share the memes (and the blogs too if you are thusly inspired) so that we can, together, instead lighting it Blue, light it up TRUE.

Happy Autism Action Month.