Autism's Prisoners!

I will try to fix you, what many autism parents promise to their children each and every day of their lives...

My daughter and i are prisoners of autism. Sound harsh?  You bet it is, and i am not afraid to admit it anymore.

I am going to take a bold step here and try my best to paint a picture of life living with autism.  In the next few months i will share with you real life stories.  These are stories of medically ill children and the journeys their parents are on to help their children.

If you do not already know a family imprisoned, you will soon.  With the current statistics at 1 out of every 88 children on the autism spectrum, it is likely that a neighbor, church friend, coworker or family member is deep in the trenches!

Autism is a spectrum disorder, meaning that children/teens and adults vary in severity and fall somewhere within a wide range of abilities.  

Unfortunately it is very difficult to generalize when speaking about this disorder due to the spectrum factor.  What i will be referring to is the children and families severely impacted, those that have medical issues and are being held captive in their bodies desperately trying to get out, believe me they are in there!

Many families do not even go out of the house often, for fear of what will happen to their child in public.  Parents fear the reaction to meltdowns, the staring, negative comments and unwanted advice from the public, who in most cases do not have the slightest clue!

We want to help our children but are frustrated by the lack of services and dedication from the medical community, schools and other resources.

When you try your best but you don't succeed... 

Witnessing the play of NT children can often be extremely painful to us, many of us see our children regressing before our very eyes and we are scared. Often feeling pain, loneliness and hopelessness.

stuck in reverse...

We never did anything to cause this, nothing happened on our watch...

Autism never leaves our minds, never!  How do i help my child?  That is the question on our minds every single day. We live, breath, walk and talk autism! Our entire life is controlled by the autism beast

Parents are tired and worn down, nervous about their child's future and in panic mode about what may happen to them if they pass or fall sick.  Many of us do not sleep, eat or care for ourselves well.

When you feel so tired but you can't sleep...

I posted about the congressional autism hearing, the first in ten years, here, i had genuine intentions on posting an update within a few weeks, however, i kept making excuses for delaying it.  The holidays, back to school, blah, blah...

Reality hit me this weekend....the truth is, i do not believe the general public cares!

Does anyone not impacted daily really understand?  Believe it or not, there are still people out there that think of the movie Rain Man when they hear about autism. Trust me folks, although Hollywood tried their best i believe, that movie is not a very clear depiction.

Here is a link to the Congressional Hearing.  This is the full hearing, a little long, yes...but very informative!

Here is a short link to Mark Blaxill's testimony, Board member of SafeMinds and parent of a child with autism.  

Families were not allowed to attend the hearing but were allowed to submit their testimony to be put in the official record.

That brings me to my first story.  The following is a testimony submitted by a parent who is dedicated to helping her child.  I have great respect for this mother, a passionate warrior in the fight for her son.

I wish to thank Erin Teegan for allowing me to share with you her testimony.  This is powerful and very real.....

Chairman Issa,

In response to the House Committee on Oversight and Government Reform's

hearings on the rise in autism prevalence, I would like to submit our son's

story for the Congressional record.

Finnigan was born in March of 2009. By all accounts, he was healthy, and at 7

pounds, 12 oz and 21 inches long, handsome as can be. Finnigan was my first

baby.  I wanted to do everything right.  I read the books, took classes and

followed doctor’s orders (and so did Finnigan’s father).

His first vaccinations did not come until he was 3 months old.  Shortly after

his first vaccinations, Finnigan started vomiting.  Not spit up, projectile

vomiting.  As his parents, we resigned ourselves to putting a queen comforter

on the floor, because it was easier to clean than the carpet.  He sat on his own at 6 months, crawled at 7 months.  At his six month old

(09/2009) “well visit”, he had another round of shots.  This time, he

received another 4 vaccinations.    He was constantly sick with one thing or

another, such as runny noses, spitting up/vomiting, gassiness, irritability,

fevers coming and going, and ear infections. We were told to change his

formula, perhaps that would help with any intolerances.  It didn’t.

Developmentally, Finnigan hit all of his milestones until he was about 9

months old, just 3 months after receiving a total of 6 vaccinations in one

visit.  Up to that point, he was babbling, “mama mama” and “dada dada.”  No

real words yet, but he was engaged.  He laughed, looked at us and was happy. 

He understood everything that we were telling him and was extremely

inquisitive.

Between 9-12 months of age, we saw Finnigan decline.  He didn’t babble as

much, his vomiting continued. We were waiting, just WAITING for signs that he

was making progress.  They never came.  He also started grinding his teeth.

The drooling became more noticeable now than it ever had been.  He started to

get dark circles under his eyes. 

March 23, 2010, at 12 months of age, Finnigan had a total of 5 vaccinations,

including the MMR.  At one year of age, he had had 17 vaccinations.  Between

12 and 15 months, we lost Finnigan.  He was absent.  He was constantly trying

to escape from us.  Finnigan had NO sense of danger.  Constantly running

against walls, jumping off of couches and rolling on the floor.  He would

only sporadically respond to us.  Finnigan even pushed me, his own mother

away from sitting next to him on the couch.  He wouldn’t hug us anymore.  The

biting and scratching also started. 

Finnigan went back to the pediatrician for another round of vaccines in June

of 2010.  After that, I was either calling or in for an office visit with the

pediatrician, sometimes 2 or 3 times a week for the vomiting/diarrhea.  I was

consistently told not to worry, yet I still went back!  He wasn’t sleeping. 

He was biting.  He wasn’t babbling at all anymore.  SOMETHING WAS WRONG!!  He

was in agony, and NOBODY WAS LISTENING TO ME! As his mother, I just KNEW that

he was sick.

We had him evaluated for his general development.  Yep, he was delayed.  At

16 months of age, his speech was that of a 6-9 month old and showed some

remarkable delays with development and motor skills.  Without hesitation, we

started intensive occupational, speech and developmental therapies with the

Early Intervention Program.  We did see some benefits coming with the

therapies, although it still seemed like Finnigan was struggling.

At that time most of our nights were sleepless.  His screams pierced the

darkness of night and we, mom and dad, spent shifts at his bedside,

attempting to calm him. No matter what we tried, he was inconsolable.  He

would sleep only when his body tired from his screaming, just to wake up

again in another fit of screaming.   He was also grinding his teeth every day

now.

We spent 3 hours of January 20, 2011 having another developmental evaluation

completed for Finnigan, this time with a developmental pediatrician.  We also

saw speech, occupational, and developmental therapists as a part of the

evaluation. I had read the DSM criteria for diagnosis; I knew he would

probably fit within the bounds of Autism.  Somehow, this did not lessen the

sting of having that label put on him. Finnigan was diagnosed with Autism. I

never thought it would happen to our family.  We were told by the diagnosing

pediatrician that there wasn’t much we could do to help him outside of

behavioral therapies. That answer seemed too one-sided.  There had to be more

to Autism.  My child seemed SICK, MEDICALLY SICK.

I started to look for answers on my own.  Reading.  Asking questions. 

Connecting with others in the Autism community.  We found a new doctor, who

specialized in medical treatments for the comorbid conditions of autism.

Immune dysregulation. Gut dysbiosis. Food allergies. Heavy metal toxicity. We

put him on a wheat, dairy, soy and chemical free diet. Wow!  We saw the

“paper bag” be lifted off of his head.  He was aware!!  Finnigan looked

around his house like it was the first time he’d seen it.

Despite the good changes we were seeing, the diarrhea worsened substantially.

 Finnigan started to posture himself in unusual positions over his belly to

put pressure on it (i.e. tables, couches, floor)-in attempts to relieve the

pain that he was feeling.  We then saw 2 Gastroenterologists, who both

suggested that he have “toddler diarrhea,” that we gave him too much juice,

or not enough fiber, or even that we should remove all the restrictions from

his diet, even though I had CLEARLY stated I thought those very changes were

helping him medically and behaviorally.

After we weren’t being heard AGAIN, we sought out a GI specialist for a third

time.  I just wanted someone to listen, really listen.  The doctor ordered

some screening tests be done for his gut.  We went to Texas and saw the GI

doctor.  Finnigan had diagnostic tests done.  The doctor found lesions in his

gut.  Inflammation. It was no wonder he was in pain!   We started treating

the inflammation and lesions.  Within 3 days of starting, Finnigan smiled! 

Really smiled!  He was happy! After about a week, he was sleeping through the

night again. Just like magic, it was.  It was nothing short of amazing!  

We continue to fight for Finnigan every day.  As we dig deeper, we find that

his GI distress is connected to mitochondrial dysfunction.  To metabolic

dysfunction.  Immune deregulation.  These problems become viciously

intertwined, where it can be likened to plugging holes in a colander as the

water is pouring out.  It becomes very hard to plug all the holes at once,

but we’re still going to keep trying.  We maintain his gluten, dairy, soy,

and chemical free diet.  We’re continuing to monitor and treat his gut.  We

supplement his diet with nutrients that his gut does not absorb so he can

develop well.  And the next step is likely to tackle the heavy metals that he

has been harboring in his little body with chelation.  It is one VERY complex

puzzle that we are trying so hard to piece together.   

We have many dreams for Finnigan and know that he will do incredibly well in

the future.  In 2 short years, our non-verbal, screaming child is now happy,

verbal and extremely silly.  We are seeing his personality shine.  He plays

with his sister.  I can’t wait to see where he’ll go next.  He is one strong,

amazing little boy at only 3 years of age.

I urge you to do the same, PLEASE DO NOT GIVE UP!  Keep beating that drum. 

The science shows that our children were adversely affected by vaccines.  Our

story is not unique.  There are thousands of parents that have similar

stories to ours.  There is a pattern.  A pattern of illnesses following

rounds of vaccines.  And subsequent, and often more serious illnesses

following yet more vaccines.  And sometimes, tragically ending in death.  It

is a downward spiral that is very hard to dig out of.  We are losing a whole

generation of kids, while the NIH is partnering patents with vaccine

manufacturers.

Thank you for allowing us to share our stories. I hope that when you read

them, you see the similarities, and can understand our frustration and fear.

And then I hope you will do something about it, as this will affect every

American financially.  The tsunami of affected children will be aging out of

the system soon. Not working. Not paying taxes or into Social Security. But

they will be collecting. Who's going to pay for that?

Sincerely,

Erin Teegan, Finnigan's mom

And i will try to fix you...

Feel the emotion?  I hope this will give you some insight, please share to help spread awareness.

Next time, another heartfelt, real story!

Peace, love and happiness always...

~Lisa

Lisa is the owner of Kaitlin's Hideout, a play center for children with autism and a social, support and resource place for parents. www.kaitlinshideout.com