Monday, December 26, 2011

It's ALL in your mind!...or, is it?

I just read about an article that came out not too long ago in the journal Nature and was discussed on MSNBC in November (see Autism can be an "advantage", says researcher). Throughout the article were comments like the following:
"By emphasizing the strengths of people with autism, deciphering how people with autism learn and avoiding language that frames autism as a defect, researchers can shape the discussion of autism in society, Mottron said." (from article
I've seen many articles like this, but they never really bothered me...until now.  I dunno...maybe I'm in a mood!

Or, perhaps because, throughout the article, nowhere does the reporter or the author discuss the importance of the medical ramifications of this disorder.  Or the toll the medical ramifications take on families.  The pain, confusion, depression, and the body-gone-haywire sense to Autism is nowhere to be found.  The meltdowns, the digestive problems, the sensory overstimulation, the inability to speak....all are minimized.  The real danger of this sort of "research" resides in the fact that the researcher is attempting to silence a huge part of the story; it's the part of the story that more affects quality of life than any other factor, and that includes social attitudes. 

When, oh, when will these researchers come up with something that actually helps??  Do something that a real ETHICAL researcher would do...research something that will help alleviate some suffering in the world.

An article such as this does nothing for most of the families living with Autism that I know, including mine.  Autism is fine!  Autism can help the WORLD!

-- It would be nice if our world were that rosy! why did I breathe a sigh of (partial) relief when I learned my youngest was a girl?  why do I vigilantly watch my youngest with paranoia now as she hits that "critical age" to ensure that I catch ANY sign of abnormality?  why do my fellow Warrior parents hold their collective breath whenever they see something that could be "one of the signs"? 

Look.  If Autism was just a "different way of thinking"...then you might be correct.  But that's the's not.  "Thinking"...hmmm...sounds like someone thinks Autism is merely a mental issue!  Here we go again!

Autism is serious business.  If you want to dig into some real research, dig the SCIA study stats, taken straight from a study that is currently going help people with Autism be the best and healthiest they can be.

Thursday, December 22, 2011

Acceptance and Change

Autism warrior powerhouse LJ Goes posted something on Facebook that got me going this morning.  In part, she says....
"If ONE MORE PERSON...ONE MORE...tells me this Christmas, how I need to find THE BLESSING IN AUTISM I am going to say one of the following things: ...."

She goes on to list various things in life that are commonly seen as tragedies (cancer, car accidents, divorce, etc) and shows how ridiculous it would be to refer to those things as "blessings".

Her post evoked in me what is commonly known as the Serenity Prayer:
Lord, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
There are two somewhat militant subgroups existing today in the Autism community.  One group is for ACCEPTANCE of Autism as a "personality" argument for neurodiversity; in fact, many of the people in this subgroups are people who have Autism.  This group often takes offense to anyone trying to change Autistic symptoms or trying to cure it.  Many in this group are either higher functioning or have been diagnosed with Asperger's. 

The other group is known as the "Warriors".  This group consists of families who have been greatly affected by the health issues embedded within Autism and live their lives within protocols:  biomed, chelation, HBOT, etc.  This group strives to CHANGE their children's issues.  They also many times seek answers for WHY their children have these issues...many times arriving at the conclusion that modern society, with the Big Business-Pharmaceutical links, is the cause.

The difference between these two groups?  One ACCEPTS what (they think) they CANNOT change.  The other seeks to CHANGE the things (they think) they can. 

Before Summer 2011, I resided in the ACCEPTANCE group.  However, I wanted my son to be able to speak.  I wanted him to be able to do seemingly simple, physical things that other children younger than him could already do.  Was that asking too much?  For him to be able to ride a tricycle?  To cut with scissors? 

Once Nathan went through testing, a metamorphosis occurred.  There's NO WAY you can educate yourself with test results and then ignore what you've just learned.  NO WAY can you learn of your child's leaky gut, neuroexcitotoxicity, inflammation, and dysbiosis....and do nothing.  I became a member of the Warrior clan.

I am still a "baby" warrior, but a warrior, nonetheless.  It's not the life I set out for or chose.  I don't feel "blessed" to see my family have to go through this.  The fact is that our son has Autism...that much has been accepted.  But the fact that our son has all of the above conditions that exists in virtually ALL people with Autism who have been medically tested(TBA for those who have not yet been tested) CANNOT be accepted.  My son's issues must be addressed, as any kid's issues must.  To do any less would be sheer NEGLECT on my part as a parent.  Any other condition would warrant medical testing, so what is so different about this condition?...are the doctors really fearing what they (or the public) will find??

As for seeing the blessings in our circumstances, the only BLESSING I've seen has only occurred lately....that we've found ANSWERS for our son's issues, which are now being treated.

If you have a child or a person close to you who has Autism who has not been tested medically, it may be assumed that they are "healthy" and that they simply have Autism.  It's just the way things are, right?  I was one of those people.  Well, you've heard that quip about making assumptions?...I'm here to tell you it is 100% TRUE.

I WILL ACCEPT my son's current interests and needs to stim, run, and jump.
I WILL CHANGE my son's digestive issues, toxicity issues, and allergy issues with the use of supplements and protocols.

See?...I CAN do both. 

Most people can...they just need to accept the "WISDOM to know the difference".

Merry Christmas and Happy Holidays....  

Tuesday, December 13, 2011

Parity?....WHAT PARITY???

I've been really struggling lately that my son, and other kids with Autism, are written out of insurance benefits in many companies.  Our insurance company, United Healthcare (which is dictated by my husband's employer), has ASD called out and excluded BY NAME from all therapy benefits except for Psych "counseling" services.

Nathan does not need counseling.  The only reason the rest of my family would might stem from our frustrations of not being able to provide APPROPRIATE treatments that will actually help my son gain a way of communicating and coordinate his sensory system.  Treatments which my husband's employer refuses to cover. 

"Speech therapy and occupational therapy not covered in cases of Autism Spectrum Disorders", says the Almighty EOB.

UHC claims Autism is a "complex developmental disorder" that falls under the auspices of their Behavioral Healthcare division...of course, they leave out the basis of that disorder: a MEDICAL condition.  They accept that several MEDICAL CONDITIONS can cause Autism:  Rubella, Encephalitis, Tuberous Sclerosis, Fragile X, and PKU.  It's unknown as to why vaccines are left off of that list, since even the nation's vaccine court has conceded that there is, in fact, at least one case in which vaccines caused encephalitis...which causes Autism.  Interesting how the linkage only goes so far. 

UHC is quick to suggest pharmaceuticals in their list of plausible treatments, while immediately using disclaimers of "not enough evidence", "unproven", "flawed" while describing biomedical interventions, while also stating that "parents report improvement".   

Then again, UHC also claims they know what Autism looks like in children:
"They do not actively cuddle or hug but rather they passively accept physical contact or they shy away from it. They may become rigid or flaccid when they are held, cry when picked up, and show little interest in human contact. Such a child does not lift his/her arms in anticipation of being picked up. The child may appear to have formed no attachment to his/her parents, and does not learn typical childhood games, such as 'peek-a-boo.'"(from the UHC website).
HUH???  I don't know what 1960's psych manual they pulled that one out of!

The Mental Health Parity Act expanded by Pres. Obama in 2010 says this:
"The new law requires that any group health plan that includes mental health and substance use disorder benefits along with standard medical and surgical coverage must treat them equally in terms of out-of-pocket costs, benefit limits and practices such as prior authorization and utilization review.  These practices must be based on the same level of scientific evidence used by the insurer for medical and surgical benefits." (from
One main tenet of the Act altered by Obama was that this one extends protection to benefits for treatment for substance abuse.  SUBSTANCE ABUSE.  My child did NOTHING wrong.  My child abused NOTHING.  If anything, our son has been the unwilling victim of apathetic, ignorant, willfully unknowledgable mainstream doctors.

On the same website, Secretary of HHS Kathleen Sebelius explains the further reason for this expansion:
“The rules we are issuing today will, for the first time, help assure that those diagnosed with these debilitating and sometimes life-threatening disorders will not suffer needless or arbitrary limits on their care,” said Secretary Sebelius.  “I applaud the long-standing and bipartisan effort that made these important new protections possible.”
Yes:  Autism can be debilitating.  My son is almost 5 years old and gets frustrated because he cannot communicate with us.  It is NOT behavioral.  He WANTS to talk.  He is physically unable.  He has to be on a special diet because of his allergy to 40 different foods.  He has to take a list of supplements to heal his gut and control the systemic inflammation that has resulted.  This story is told over and over again in countless families I know in the community I am a part of.  If the ensuing chemical imbalances and nutritional deficiencies are left untreated, epilepsy can result (as it does in 20% of the population):  very much a life-threatening condition!

So let's throw the argument of whether Autism is mentally or medically based out the window for now.  Let's go along with what UHC says: it requires mental treatment.  In that case, let's place my son in the only evidence-based, research-proven behavioral treatment that has been recommended by the Surgeon General...let's get him some ABA.

Oh.  You don't cover that either!  Curiouser and curiouser!

In addition, to say that my son would not benefit from Speech-Language Therapy or Occupational Therapy is a flat-out LIE.  We saw progress when my husband's employer "accidentally" included these services on our benefits page, causing us to quickly enroll Nathan in Speech and OT at a clinic.  His sensory issues began modest improvements during the 4 mos he was there, and he was able to focus on listening thanks to OT.  Speech was training him on his PECS book.  He was making slow headway.  Then therapy was quickly yanked out from under us when the "mistake" was discovered. 

The school district has done little for us.  Their only concern has been making him sit, getting him to pay attention, and following a schedule...oh-- **laugh**--...and "quiet hands".  All things that are not for his benefit and well-being, but for a future teacher's comfort level.  They are preparing him to sit in a special ed classroom, to be quiet, and to passively do mundane art projects and tasks.  Almost 3 years have passed since we began "therapy" with the school district...he still does not have a solid way to communicate with others outside the family. 

So, with all of the above in mind, I ask this and leave it open to you all to answer: 
Where is the "parity" for the Autism community??

Sunday, December 11, 2011

Communication WOW's!

Quick AWESOME update....

We went to my Secular Franciscan Order fraternity's Christmas party...not a huge crowd there, but the room was a big one, which usually drives Nathan giddy (lots of running room, interesting acoustics, etc).  He was focusing and engaging enough for people to notice that something had changed...which is exactly what I want! :)

However, at some point after we returned home, Nathan went over to his PECS book and started rifling through it.  He stopped on each page, looking for the words he wanted.  Then he touched a card, took it off, placed it on the sentence strip, and looked for the "I want" card that is usually on the first wasn't there, so the closest one left was the "No" card, which had a face on it and was big, much like the "I want" card.  He gave us the strip (looking at us, of course!), gestured, and said something that we couldn't understand....still looking at us all the while.  The strip he gave us said this:
No + toy cars

I already explained the "No".  As for "toy cars", he has given us this card before when he wanted to go a car.  After he gave us the strip, I asked him, "WHAT do you want??"  He slapped his hands together and tried his hardest to make his mouth say the right things...finally, still looking at me, he said,

"Go go...go away, go away!"

He wanted to go my husband quickly obliged and took him to the bookstore at the mall (only indoor, Nathan-friendly place open at 6pm on a Sunday).  They have a great kids section that Nathan loves to explore. :)

Nathan's attention/attempts to communicate over the past month or two have been making our heads spin lately.  I feel like I'm on a train, watching everything go by in a blur!  The past weekend alone, we've seen differentiated, meaningful gestures, use of a new word, and continued retention of the famous 3-syllable popsicle.  All this progress coming after a stall in communication that has lasted as long as this kid's diagnosis at 26 mos old!! There still may be some unbelievers that it's the biomed/chelation combo that's at work here, but all I can say is this:

Before biomed:  Headaches, sound sensitivity, park meltdowns, diarrhea/constipation, bloated belly, NO verbal communication/word use, hyperactivity/lethargy.

After biomed/allergy management (pre-chelation):  More periods of calm, some increased eye contact, GREAT improvement on gut function, sound sensitivity GREATLY improved.

After biomed/allergy treatment/chelation (currently on Round #8):  HUGE increase in eye contact, "attention-seeking", use of novel gestures/PECS, improvement in motor and verbal imitation, verbal use of words we haven't seen in ages!, also receptive language through the ROOF!  My son now looks at people almost as much as an average peer would

 All this progress couldn't have come at a better time...Merry Christmas to us!!

Thursday, December 8, 2011

Round 7, MILK...and THREE syllable words!!!!

Hello, friends...
It's been a few days...I'm still trying to get in the swing of blogging more regularly.  We have had such an ENCOURAGING past couple of months...we are seeing new things pop up almost weekly!  Since returning home to the state of Kansas we have seen PROGRESS!! 

Past few days saw us completing Rnd #7 of chelation, as well as trying out a new promising (albeit weird to consider) treatment:

Camel's Milk. 

Yes, you read correctly.  It's an up and coming one for the Autism community, but not a new one (see for more info and background).  This stuff heals allergies with a ton of Immunoglobulins.  It heals the gut with it antimicrobial properties.  It can be drunk by most people who are allergic to dairy...including my son, as we found out.  It's been an immune system must-have by certain Arab groups for a loooooong time; parents still send their children to live on it for a couple weeks in their youth, as they know of the good health acquired from it. 

We tried it on a whim.  A friend of mine got her hands on some and decided to I took a chance and bought 2 pints.  Nathan's sleep was spotty; he spent 4 nights of getting up several times/night.  Nathan slept the WHOLE NIGHT after drinking 2 doses (1/2 pint) of the camel's milk in one day.  The same thing happen the next night, too....and the next night!  I was nervous about digestion, as the last dairy I gave him (dairy-cultured probiotics) was a disaster; hosing him down in the tub became an almost everyday occurence!  His BM's were PERFECT on the camel's milk!  I will also note that he has begun his night wakings again since we ran out of the milk...but I'll agree not quite enough data was available this time to show a true effect on sleep.

The 4 days we gave Nathan the milk, we saw new motor behaviors:  kicking for the first time (REAL, voluntary kicks on demand...not just sticking his foot up), stomping, "dancing" whenever he heard a familiar song, and play with his sister!  The real difference about the motor stuff is that he seems AWARE that he's doing these things...he looks at me, smiles, and then looks at himself while he's doing a big "Look at me, Mom...look what I'm doing!"  This is all BRAND NEW.  Nathan also was able to climb all the way to the top of an indoor playground at the mall for the first time, while following and playing with his big sister (yes: he was INTERACTING and PURSUING).  This happened with no prodding...he just ran in and did it.  Once again, a first!!

Yesterday, my husband and I heard Nathan, plain as day, say his first 3-syllable word: Popsicle.  Sure, it sounded more like "pop-puk-oh"....but OMG, as a budding Speech Pathologist, I LEAP FROM MY CHAIR when I hear that a kid who previously could only produce 2 syllables, usually reduplicated ("pop-pop", "op-eh-op-eh", etc), can now approximate all 3 syllables of a 3-syllable word!  We have tried EVERYTHING to get to the point where Nathan could make his mouth say more than just babble and more than just 2-syllable pairings!  I held off on SUPER-EXCITEMENT until today, when he said the SAME THING again:  "POP-PUK-OH" to my ears!! :)

I don't know how much of these gains are from camel's milk and how much are from chelation.  We do chelation almost every weekend.  We started seeing improvement....small things here and there, very gradual....from the beginning.  He is still staying away from the foods he is allergic to, and he is still on most of the supplements ordered by his DAN!  With the supplements and diet, we saw Nathan "calm down."  He was able to stop rampaging through the house, going crazy with stimming.  His gut functioning and belly distention got better with diet and enzymes.  When we started chelation, THAT'S where the leaps and bounds have occured.  We never know what we are going to see with a round of chelation, so regardless of when we started the camel's milk, it would be difficult to pick it apart.  The jump in understanding and complying in what we say to him...his first couple successful trips to the potty at school...the EYE CONTACT...the interactions with others...this all coincided with chelation.

When the time is right, we would like to see what else camel's milk can do.  With the holiday/birthday season upon us, we are holding off on shelling out the bucks for it, as well worth it as it would be.  But until then, we keep plodding along....enjoying every bit of progress we can get!  Doctors can shake their heads or ignore what we've done, but I don't care...

The progress cannot be denied in this house!!

Until next time!.....