Archive for the ‘Autism’ Category

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I have shadows that dance around,
In the walls of my brain.

They whisper about moments I
Sometimes allow to stir.

Conversations with doctors
Advising me before that final shot.

So many coincidences and uncertainties.
That last one changed our whole world.

No fear that he was too weak.
None realized he was allergic to ingredients.
Contraindications be damned –
Hospitalizations following vax coincidental.
The dots did not connect.

He was so sick, so weak and I thought I was protecting him.
Our duty for the greater good.

I don’t reminisce there often.
Those dark shadows still sting, too much.

#MINE – NO to #SB277 – #B1LESS

Never

Posted: June 10, 2015 in Autism, Food allergies, Parental Rights

Something I don’t share very often is my love for creative writing and poetry. I’ve been so shaken after the California Assembly Committee voted “Yes” to SB277. Truthfully, I’m sad that so many lawmakers think it’s okay to ignore their constituents and eliminate basic constitutional rights.

There is enough evidence out there to prove vaccines are neither safe, nor effective. Don’t believe me? Consider just a few undeniable facts. 1) Doctors and pharmaceutical manufacturers are exempt from any liability to adverse reactions. Claims are tried in private court without true discovery or jury. 2) Whistleblower William Thompson, a key CDC scientist has come forward admitting CDC willfully manipulated data of safety research to skew intended results. Additional whistleblowers from Merck have come forward accusing company of fraud & “fixing” efficacy data for Mumps. 3) There have been no measles deaths in US in over 10 years, yet 108 deaths to adverse reaction to MMR vaccine.

In fact, vaccines can and do cause harm for some – it’s time that all of this collateral damage be respected and considered. Severe adverse reactions have rocked my family’s world. It’s all laid out in his medical history in stark black and white. And yet, despite the horrible history of life threatening hospitalizations resulting from vaccine adverse events…including intestinal bleeding…and the knowledge that milk proteins (ingredients my son is SEVERELY allergic to) are present within most of the recommended CDC vaccines; including DTaP, Hib, Hep A, IPV, MMR, Varicella, & Pneumococcal. I have to continuously remind his doctors that these ingredients are present…they are completely unaware. As was his first pediatrician in 2008.

Never

Never would I ask you

To set your own child ablaze

Giving warmth to my own.
Or, harbor fierce judgement

When you don’t understand

This life I have witnessed.
Lucky, you can afford

The willful ignorance

Like I once had before.
Never would I ask this if –

It might cause harm again.
You dare judge my choices

And never felt that fire

Burn your soul with dogma

Hot with lies forcing you

To face conflict every day?
Never would I expect

You to risk your child’s health

In exchange for my own.

All my best,

Muckraking Maven

It’s been far too long since I’ve posted an update on our NAET journey. Life has been full of twists and turns, as it often is, and time has been difficult to find for updates. For those that have been curious, we are now two years deep into NAET treatments for our son. We’ve had some financial struggles over the past year and a half, so treatments have not been as frequent as I’d like. However, we continue to eIMG_0315xperience vast benefits from each treatment, so we will continue along this path.

Today, my son is thriving. He’s mainstreaming in a general ed classroom full time and has an aid to help him. We are hopeful that his aid will successfully be phased out over the next year of school. Mr. W. has exceeded all academic expectations, made real friends, and gained improved social skills from his peers. It’s been a wonderful year and we’re very proud of all of his accomplishments.

W still struggles with gross motor coordination and fine motor strength. We will continue to work on this, we’re still trying to master riding a bicycle. However, the Big Wheel that his Gran just bought him is a really great start. It simplifies the process just enough that he can relax and simply have fun with it. Slowly, he’s building up the muscle memory that he will need to be better at riding his bicycle. He’s finally getting the hang of the concept that you have to steer and pedal simultaneously. (It’s those simultaneous gross motor tasks that become truly overwhelming.)

I’m grateful that we discovered NAET treatments and will continue to take my son to Dr. Chernoff for future care. With every step we take, we get to understand more underlying puzzles that conventional doctors could never resolve.

All my best,

Muckraking Maven

Yesterday, the McClain Special Needs Advocacy Group issued a press release holding Disney Parks accountable for a poorly implemented and inadequate Disability Access Service policy.  Many throughout the disabled community are hopeful that this catches the attention of Disney executives sparking the initiative for adjusting this new program to include the accommodations that were present in the previous GAC system.  At the end of the day, they haven’t really removed the ability for individuals to commit fraud in the new program, instead they’ve removed accommodations that thousands of families relied upon for decades – making the DAS less appealing to anyone with unethical intentions.  Many people express the willingness to share medical or educational records ahead of time in order to truly reduce fraud.  This could be easily achieved with the implementation of a pre-registration database.  However, Disney has maintained a stance that they are prohibited by law to review such official documents.  These families feel as though Disney does not care to listen or consider their needs.  Where Disney was once a place of magic and sheer joy, the name now resounds with a harsh reminder that another part of our world no longer recognizes the unique needs of the physically and cognitively disabled.  It’s very sad.

You can read the press release here.  (Don’t forget to share it, like it, post it – everywhere for maximum impact!  If you’re able to attend the protest in Anaheim this Saturday, get full details on Kim McClain’s Facebook page.

atragickingdom.com

Have you visited http://www.atragickingdom.com yet? Try it out!
You can learn more about recent experiences with the new DAS and voice your own opinion too!

I’ve been thinking about Disney’s elimination of the GAC and its accompanying accommodations for weeks since the first rumors of such a change leaked.  In the beginning, I worried that my anger and frustration stemmed from my typical resistance to change.  I made several calls to Disney HQ, but did not get very far.  There was little insight to glean from those calls as everything was initially denied, then noted as confidential.  Their representative did try to head off my anxiety with reassurance that their executive management team was listening to the Autism community and putting thoughtful consideration into the development of an alternate program.  Well, today is October 9th – the day of GAC death and DAS birth.  Disneyland’s newly posted services web page makes it very clear where to root of my sadness on this issue resides.  The new services page demonstrates the total lack of understanding or compassion to the cognitive differences our children cope with everyday.  In essence, this new policy reads with the same awful lenses so many of us spectrum parents have become accustomed to in our everyday lives.  Read it and tell me if you don’t get the tone of, “Buck up and do a better job parenting your cognitively disabled child so that your children can enjoy our park with the same expected behaviors of neurotypical families.”

The, “How to Prepare,” segment of this page was especially insulting – especially considering how so many of us already make good use of the standard communication tools.  From PECS to visual schedules, watching videos, and studying maps, I can assure the executive staff at Disney that most of us Autism parents were introduced to such basic concepts back in the days of early intervention.  Yes, these are effective tools, but most of us already employ these measures and more to prepare our children for any necessary scenario.  I’m a pro at  writing social stories for my son – I’ve even made the occasional video – and yes there were days that we relied heavily on a visual schedule.  However, none of these tools can adequately prepare a child with cognitive disabilities, including sensory dysfunction, for the disruption to routine planning that is inherent with visiting an amusement park.  Furthermore, the mere suggestion that we practice waiting in line is absurd.  Most of us are already doing this in an attempt to push our child’s tolerance to a more acceptable level – and yet our children still have severe limits with waiting.  There are no local venues with the same level of sensory overload and hostility as one might find inside the gates of Disneyland.  I’ve also got to say that if Disney really thinks that simply bringing a sensory toy, “like a stress ball or other calming item,” will prevent a child from experiencing sensory overload, then perhaps the managers that crafted such trite advice should spend 100+ hours with a licensed occupational therapist so that they can truly understand the real world impact of sensory dysfunction.

I am sad that Disney’s position appears to be that our children can handle the new DAS without accommodations that enable our children to wait for their turn at an uncrowded alternate entrance to attractions.  I am sad that they believe that our children can cope with a loud and boisterous crowd, while waiting in line, if we only pacify our child with electronic devices.  Devices that many smart parents would worry about breaking or losing during such a visit.  I don’t have money to replace my son’s iPad; I’m knee deep in out of pocket medical costs, $100 fish oil and other learning aids/therapies.  I do not understand why Disney would not make some compromises to the new program – including the ability to schedule multiple attractions at their guest services kiosks.    Not every child with mobility and strength issues is in a wheel chair.  Children with metabolic disorders and mitochondrial dysfunction also cope with strength and endurance.  There is an entire range of biomedical and physiological conditions that co-morbidly affect children with cognitive disabilities.  The need to return to service kiosks for every attraction is debilitating and draining.  Surely it would be possible to schedule 3-4 attractions at one time.  This would make such a procedure more amicable for children with cognitive disabilities.

I am hopeful that the peaceful protest arranged by McClain Special Needs Advocacy gets the media attention needed to turn this change into a public relations nightmare for Disney Parks.  I am praying that their executives will actually listen to our community and offer some compromise that doesn’t read like the biased-inadequate-parenting-garbage that so many of us must encounter in our daily routines.  Is Disneyland the happiest place on Earth?  No longer, if you possess a cognitive disability.  What I have gathered from Disney Parks latest action is that they no longer care to pretend they accept or understand the differences and challenges of cognitive disabilities, like my son’s Autism.  Game over. The final bell of magical happiness for my child’s future vacations at Disneyland has tolled.

Information on the New Disney Parks Disability Access Service Card

Services for Guests with Cognitive Disabilities

I know I’m a bit belated in posting updates about my son’s NAET journey.  I suppose that’s because our life gets so chaotic and crazy sometimes.  It’s just par for the course really with my spectrum kiddo mainstreaming kindergarten and an eighteen year old beginning his college journey.  Oh, and we can’t forget about our fifteen year old beginning his sophomore year of high school either.  We’ve had back to school fun, the subsequent illnesses that always seem to follow returning to public classes, and an extremely hectic workload for the past few months.  I’ve got a running list of social stories to write (needed as of yesterday) as well as many issues to vent about in our world.  Today, I wanted to focus on happy, so this update seemed most fitting.

We are now 6 treatments deep into NAET with my W and are still overjoyed with the progress these homeopathic treatments are providing.  I’ll use the same format as before and list the most significant and notable improvements:

  • Greater understanding of family relationships:  Understands that he has cousins and that these are the children of his Aunts & Uncles.
  • Continued improvements with communication.  Better able to spontaneously communicate his wants and needs – including sharing specific details about illnesses. (Able to tell me that he has a headache, tummy ache, etc.)
  • Improved conversation and less wary of people he doesn’t know.  Even striking up conversations with strangers in stores and restaurants now.
  • Increased curiosity and ability to ask questions regarding the meaning of various words and things.  Now, he fires off questions like a machine gun firing.  “What’s direction mean, what is combust, what is a gymnasium, what is a conjunction, what’s the biggest word in the dictionary…”
  • No longer screaming in protest if I join him in a song or dance.  In fact, we recently sang a song together for the first time after his third treatment.
  • Keratosis pilaris rash on upper arms is nearly gone.  Bump under right eyelid is much smaller as well.
  • Increased joint attention and interest.
  • Improved patience, flexibility, and waiting.  Better able to understand verbal explanations without visual aids.
  • Increased fine motor skills – able to manipulate small parts on various toys without help. (i.e. attaching the diving hose to his Octonaut Gup C and Captain Barnacles, fixing the treads on his Walle robot)  Even willingly sat down to draw and write the other night.  (This NEVER happens without much protest and fighting and he initiated this on his own, happily!)
  • Better control of sensory overload – particularly hand dryers in bathrooms.  These used to result in W running, screaming, and crying.  Now he’s able to cover his ears with his hands and tell me he doesn’t like the hand dryer.
  • Requesting play frequently – wanting to engage in imaginary play more often with greater flexibility.
  • Increased eye contact – especially when requesting something he wants – almost to a comical point.
  • Improved awareness of his surrounding environment and better reading comprehension.
  • Better able to cope with crowds and social events.  W is an Easter Seals Ambassador and attended their family bowling bash last Saturday.  We were shocked with how well he handled the boisterous loud event.  He was a social butterfly shaking hands, answering questions, and even hugging strangers that work with the Easter Seals.  I am still amazed at how well he handled the entire event & we also learned that W really enjoys bowling of all things.  I think we have some family bowling outings in our future, for sure.

W_bowling_ambassador

 

I’ll finish this update with a cute story about a book we were reading a month ago before bedtime about the Octonauts and the Frown Fish.  There is a part of this story, where the main characters decide to have a costume party and they all dress up in various costumes.  One of W’s favorite characters, Captain Barnacles is dressed in a Hamlet costume.  I’d never mentioned this to my son – instead we often focused on the more easily recognized costumes like pirates, princesses, and fairies.  W likes to assign agent names to the characters on this page for fun.  Each agent name is formed with the first letter of their name, or in this case, their costume’s name.  When he pointed to Captain Barnacles, he stated and there’s Agent H.  I said H are you sure?  W’s response was, “Mommy, because Captain Barnacles is wearing a Hamlet costume.”  I asked him how he knew about Hamlet and he told me, “You know, that guy Shakespeare.  I know about him.  I know some things.”  Now, I can assure you that we’ve never discussed Hamlet or Shakespeare, but this simply blew my mind.  He looked me dead in the eyes for the entire conversation as well.

I’m looking forward to continuing our NAET journey.  So far, I’m amazed with all the positive change my son has experienced and will continue on this path as long as it provides benefits.  If you’re interested in learning more about NAET yourself, check out the research study led by Dr. Jacob Teitelbaum on Improving Communication Skills in Children with Allergy-related Autism Using Nambudripad’s Allergy Elimination Techniques.

All my best,

Muckraking Maven

Last week, my husband and I were excited to meet a new, developmental pediatrician that has received rave reviews from many Mothers in our area.  The clinic is prestigious and known for providing expert and timely help for special needs children coping with a wide range of complex to serious medical issues.  We were hopeful that this may be the very doctor we have been searching for to really listen and consider my son’s health needs – without the fast paced cookie-cutter approach favored by so many doctors today.

Overall, the appointment went well enough.  My son’s doctor was gentle, understanding, and very kind throughout the exam.  He had a calming effect on my son that was never present with any previous physician’s.  However, when we got midway through my 4″ binder of Wyatt’s medical history, we screeched to a halt on the matter of vaccinations.   Now, this is not a new debate to me, nor is it a surprising one, but I was a little surprised at how close-minded the doctor became upon discussion of the known risks and potential for vaccine damage in children with a predisposition to adverse reaction.  He waved it off nonchalantly with a mention of how many parents are misguided by celebrity-driven medical advice and quack-extremist websites.

I can assure you that I am not misguided, when it comes to my son’s health.  I doubt many parents have journaled, logged, and tracked data like I have over the years when it comes to my son’s autism and the ebb and flow of behavioral challenges or health concerns.  I periodically track his nutrition by reviewing his diet closely a few times a year on a spreadsheet.  (Yup,  I’m OCD about this stuff.)  This ensures that I’m packing as much nutrition as possible into the meals he is willing to eat.  If a questionable or negative behavior arises, I chart its occurrence – as well as the events preceding and following such an event.  This helps me to uncover a root cause to address.  When in doubt, I create a social story because this is the most effective means for my son to quickly understand expected social cues and upcoming new experiences.  I inhale scientific studies with my morning coffee on a wide range of subjects.  I read beyond a study’s Abstract, even if this includes 50+ pages on average, per research paper.  My opinion on the vaccine-autism link is steeped in personal experience, 60+ scientific research studies, and the fact that my son continues to improve as we improve his diet, reduce his exposure to toxins, and gain success through homeopathic means (NAET) proven to help reduce negative autoimmune responses.  If Autism were solely genetic; why would simple interventions like diet, supplementation, and natural detox be so effective in reducing his “Autistic symptoms?”

I am ready for more debate with this doctor and know we are game for real investigation into the root cause of past vaccine reactions.  He has referred us to an immunologist for further testing and digging – so I’m hopeful that this may provide some of the answers we’ve been trying to find for years.  What’s on my wish list?  I want to know if my son has a sulfate or glutathione deficiency, metabolic dysfunction, or methylation pathway abnormality before I consider any future vaccination.  I’d like answers for the continued G.I. complaints, that are now much improved, yet lingering with undetermined cause.  If there is a way to correct such a deficiency upon discovery, then this may enable a path where my son could be safely vaccinated in the future – but only with a single dose, milk-protein free, G.E. yeast free inoculation – and only for truly critical vaccines NOT flu shots.

If you doubt the potential for adverse reaction, browse the list of more than 60 peer-reviewed scientific studies that demonstrate a vaccine-autism link.

If you doubt the potential for adverse reaction, browse the list of more than 60 peer-reviewed scientific studies that demonstrate a vaccine-autism link.  It’s quite impressive and revealing.

I am so grateful for Ginger Taylor’s excellent list of studies supporting a vaccine/autism link.  Shared by a friend online, this resource couldn’t have come at a better time; since my notes are scattered here and there in all manner of folders .  Why do so many doctors rely on research conducted decades ago?  How can they not question the rising prevalence rates (1 in 88, now 1 in 50…) and environmental factors?  Why are they not aware of a vaccine’s ingredients or FDA mandated contraindications?  Why do they like to lean on studies like this that report incomplete data that skirts around the real questions;   like this recent study by the Journal of Pediatrics?  This study is often cited as the proof that any vaccine-autism link has been reputed, which is simply not the case.  This particular study focuses solely on the potential for adverse reaction with regard to the antigens and polysaccharides within vaccines, not the presence of heavy metals like Hg and Al, or the impact of genetically engineered ingredients like yeast, aborted fetal tissue, or other questionable ingredients.  Well done, JPEDS, I agree that the antigens and sugars are unlikely to lead to an Autism diagnosis…but what about the real questions that remain here?

When I get mad, I educate.  When I face opposition, I naturally debate an issue.  The list created by Ginger Taylor is AWESOME and I wanted to share it to help any other families that have experienced adverse reactions in their children’s health.  Vaccines do not harm all children and in theory they are powerful allies to our health.  However, I don’t see the need for heavy metals, formaldehyde, and other toxins to remain in the mix.  Take these ingredients out!  Reduce the vaccine schedule and eliminate combination series shots.  Is there a possible connection between the use of genetically engineered yeast in the Hep-B vaccine and my son’s recurring yeast overgrowth? (I believe there could be.)

I don’t understand why my son’s doctors wouldn’t be more concerned with the presence of allergens that are known to cause severe reactions in children with these conditions!  (My son has a long history of severe food allergies and intolerance – but somehow this is not a concerning factor.  Milk proteins cause intestinal bleeding in my son – I would imagine that a shot containing milk proteins is far worse than simply eating a food containing milk proteins.)  In fact, I believe this is why he had to be hospitalized for a week after his DTAP series of shots when only 2 months old. )  In brief, when there are 60+ studies that exist that do show potential for causation, why aren’t we pre-screening our children to ensure the noted deficiencies do not present a predisposition to vaccine damage prior to immunization?  I’m not asking for any weird science here…why wouldn’t we want to reduce potential risks in a product that is inherently not safe?  (And that’s exactly how our FDA puts it, “inherently unsafe.”)

Checkout Ginger’s up-to-date list on her blog.  Print it out and keep it available for easy reference.  Do you think my son’s new doctor might question the existing dogma if I printed out a hard copy of each referenced study?  I think that’s how I’m going to handle this.  Could you imagine the look on his face if I brought in 68 printed peer-reviewed scientific studies – delivered to him at our next appointment in Trader Joe’s paper bags?!  (Yea, because I recycle…and have far too many of these bags saved up as it is.)  Do you think he’d believe that I don’t rely on celebrities for my information after that?!  I welcome the immunologist’s perspective and ability to help sift through potential root causes of my son’s past adverse reactions.  Despite our difference in opinion when it comes to vaccines, this is a step that no previous pediatrician has been willing to do.  For that, I am truly grateful.

Take care,

Muckraking Maven