Update and Happy Birthday!

Last month Jon and I welcomed another baby girl into the world. Corinne Fiona arrived on July 11th weighing just over ten pounds!  I had a rocky pregnancy which is why my blog posts have been scarce.  Now that I have a newborn I’m sure there won’t be much change in the frequency for a while.  Tonight I somehow miraculously got all three kids to bed before 8:30 so I am making good use of my free time before I crash and head to bed.

Another big event coming up this week is Liam’s 7th birthday!  It’s impossible to believe he will be seven. It’s even harder to believe his diagnosis was four years ago.  Since then, he has accomplished countless goals such as learning to speak, initiating conversation with a peer, communicating feelings and being able to tolerate sensory stressors.  Before we moved to New York, we were lucky to have all Liam’s doctors and therapists at the Laurie Center for Autism and it seemed at though we lived there for the first year after he was diagnosed.  He saw a neurologist and gastroenterologist there and did all of his speech, OT and PT at Spaulding Rehab in the same building.  On the days he wasn’t there, Liam spent his time at home doing discreet trial ABA.  One of his first goals was to sit in a chair.  I remember sitting at the top of my stairs listening to him screaming while his ABA therapist and BCBA ran a program on how to get him to sit quietly at a table for one minute.  At that time he could only say “done” when he had enough and it was almost too much for me to handle hearing my baby cry.  He screamed ‘Done, done, done!’ over and over.  I knew he needed it and I knew if he pushed through he would be able to sit down for one minute and his reward was to come and find me.  That was the beginning of it all.

I didn’t know about the medical side of autism until a few months later when everything started to click and I started investigating his symptoms for myself and talking with other moms in the same boat as me.  Eczema, bowel disease, thrush, low muscle tone, sensory processing issues, cerebral folate deficiency, PANDAS – all related to autism. Gee, we thought all we had to do was modify behaviors and work on social skills and he would have a shot at being NT (neurotypical).  That was the easy part.  Battling the medical side of autism has shown to be by far, our biggest challenge of all.  I never thought my kid would have to take 30 pills every day just to function without pain, constipation, insomnia, inflammation, and to keep viruses away.  Autism is not about kids behaving badly or about bad parenting.  A major component of autism is medical.  Many times once the medical part is addressed, the behavior part eases but not always.

Liam is very smart, sensitive, funny, silly and is a great friend.  Four years ago I never thought he would understand how to play or how to run around the playground with other kids but he does that now.  He has a wonderful imagination and actually smiles when he is at the playground. This is huge for him because he doesn’t usually show emotion outside of the house.  His coaches and teachers always say the same thing – they can’t tell if he’s having fun because he doesn’t celebrate his achievements or show disappointment when he fails.

Behavior regression has been our focus lately mostly due to summer vacation and lack of a consistent schedule. Thank you school district for no summer program, good luck in September! 🙂 Communication, social awareness and building relationships will always be his greatest obstacles.  Liam has to be taught how to stay on topic and maintain conversation exchanges.  At one point we came up with a sort of script for him to use when meeting new friends and he would practice it at ABA.  It took about a year but he is able to meet someone new, say “hi” and start a basic conversation. Many times he knows what he wants to say but it takes 3 or 4 tries to get it out successfully due to motor planning problems.

I could go on forever about what’s new with Liam but I want to end this update on a happy note.  Even though there will always be something to work on or something that’s not going well, the amazing strides this boy has made overshadows them all.  The best thing I get from him is when he snuggles on my lap and says “I love you.”  He was almost four years old when he said it the first time and I will never take it for granted.

So happy birthday to my Bubba, my love, my inspiration.

XO

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1:68

This week, Dr. Colleen Boyle from the Center for Disease Control told us that 1:68 children, and 1:42 boys have an autism spectrum disorder or present autism like symptoms. Unfortunately, this number does not include anyone under the age of eight which means that Liam is not accounted for. Comorbid diagnosis were also not accounted for.  We cannot attribute this new statistic to better diagnosing and better tools – we all know that is just a distraction and not true. Those of us who have experienced autism firsthand understand the medical issues that negate our children. They have bowel disease, poor methylation, mitochondrial disease, which all work together to create proprioceptive, vestibular, and central nervous system damage that needs to be corrected.  It can take years to undo the damage done to these children.  Watching a child’s body get rid of heavy metals and toxins is heartbreaking.

Autism is medical. Autism has an environmental impetus. We all know genetics play a role in the vantage point of autism. When parents have a history of asthma, ADHD, allergies or autism, their children are at increased risk of having immune disregulation. Not only do the parents need to be more vocal but we need to talk to the teachers, therapists and countless other caretakers of these children and adults and listen to what they are seeing. Pay attention to children when you are out in public and you will see it everywhere. Every trip to the mall, every outing to the park, it’s there. Kids with pale skin and dark circles under their eyes tiptoeing instead of walking. Hands flapping and bodies stimming, no eye contact. How many of these children were developing normally then became ill? They develop high fevers, skin conditions, food allergies, bowel disease then an autism diagnosis. Kids are sick and people aren’t asking why. What are people so afraid of? We as parents on this side of the fence get judged when anything controversial regarding vaccine safety or toxins is brought to fruition. Autism is an epidemic! The number has grown 30% from last year’s statistic and we know it’s really much much higher than that. The government has spent 1.6 billion dollars over the last eight years on autism yet it has not prevented one case or come up with one cure. We are losing a generation of kids to this. There are hundreds of research papers proving a medical link to autism yet it remains a taboo topic and is classified as a mental disease.

April 2nd is quickly approaching. It’s “Autism Awareness Day” and I have come to hate the title of it. It makes autism sound like something to celebrate when I find nothing in celebrating. I will not be partaking in the “Light it Up Blue” campaign nor will I be wearing blue. Katie Wright is the daughter of the founders of Autism Speaks and the mother of the little boy who was the catalyst for the organization. She is on the boards of other organizations she supports because she doesn’t agree with the very organization created in her own child’s honor. Think about that. Here is Katie Wright’s comments of one of Autism Speaks’ many studies debunking vaccine causation: ”This is just Autism Speaks caving in to the government and Drug Companies… AGAIN!!! They just keep publishing Government funded studies by organizations who get PAID by major Drug Company $$$”

Since last year, many autism friends and people I have met through advocacy have accepted the Autism Action title in its place.  If you’re planning on making a charitable donation, please consider an alternative to Autism Speaks. Although they have brought awareness and have helpful resources to newly diagnosed families, check out their 990 and look at what they have spent their donation money on. Only a fraction helps families struggling with the challenges of autism. TACA, Generation Rescue, National Autism Society, Autism One, Safe Minds, and TMR are all much better options. If you can do anything in support of Autism Action Day, please spread the word on what is really happening. The real struggles and the real science. I have spent the past 4 years trying to recover my sweet boy. We take two steps forward and one step back but we will continue to forge on and share the TRUTH so the next generation doesn’t have to endure what out kids have.

I’m going to close with two clips from the 1993 movie, And The Band Played On.  The movie is about the beginning of the AIDS epidemic in the US and how the government, CDC, and some physicians ignored independent research and in many ways did nothing to help the people affected.  Doctors admit behind closed doors that a large portion of blood given as transfusions was contaminated with the AIDS virus and was knowingly given to patients.  I truly believe that in time, we will see films like this documenting the autism epidemic.  The numbers are 1:68 now.  There is a huge coverup going on and no one wants to talk about it.  What if it was YOUR child?  What if you saw him regress and lose all of his acquired skills after vaccinations? This new statistic is maddening and unacceptable!  I hope someday the government will listen and DO something.  Maybe when one of their kids is affected it will register.

As the first clip below asks, “How many do you need?” (If you are reading this in mobile format, please click on the title of the blog to see the clips)

https://www.youtube.com/watch?v=cdIIiYFg3cs

http://www.youtube.com/watch?v=TeC6TbLESbQ

 

 

Thinking Mom’s Revolution

I love the women at the Thinking Mom’s Revolution.  They’re a group of moms, and one dad, whose children have all been affected by autism.  My story is theirs and I feel more connected to these parents than some of my friends and family because of our similar stories and experiences.  I wanted to share a blog post that was written by one of my favorite moms in their group, Blaze.  She is never afraid to tell it like it is and this post just resonated with me so much I had to share!

Here is the blog post in full

 

I have been in the world of special-needs advocacy for 10 years, and in that time I have come across countless people who are defensive, close-minded, and extremely indoctrinated about their across-the-board absolute statements that vaccines can’t cause autism.  These people are often applauded or even possibly financially compensated for their stance.

After a decade of some disappointing and one-sided conversations, I refuse to go toe-to-toe with these people anymore, because they are not going to hear me, and I am not going to hear them.  But I would like to go on record with a quick list of how I know it did (in my son’s situation), and does happen.  VACCINES CAN CAUSE “AUTISM.”  THEY CAUSED MY SON’S “AUTISM.”  THEY CAUSED MANY OF MY FRIENDS’ CHILDREN’S “AUTISM.”

Here’s what I want to say to all the people who say it isn’t so:

1)  Many people have been compensated in vaccine court for medical issues that are a part of their autism and even autism itself.  If the American government is paying people who have autism due to vaccine-injury, how can you say vaccines don’t cause autism?

2)  Many autoimmune issues are scattered throughout my family including lupus, epilepsy, asthma, allergies, and eczema.  How do you attempt to trick a baby’s immune system, when that system is likely not functioning properly? Thirteen needles worth of maniuplation by six months of age without consideration for family history is just plain old insanity, actually.  But that’s what happened to my son.

3) Speaking of family history, my sister spent a week in the hospital after the MMR at age 7, and my cousin contracted a “rare blood disease” after her nursing school vaccines at age 24.  My sister was never vaccinated again per her pediatrician, and she will never vaccinate herself or any child she may have, either. Which leads to the argument that there are people who cannot handle vaccines, and that’s why everyone ELSE should be vaccinated – to create herd immunity for those that are contraindicated, immune-challenged individuals like my son.  Well, no one is considering each child’s vulnerability.  No one. Every child is vaccinated with no questions asked (unless the parent refuses). In addition, herd immunity is nothing more than a theory. I haven’t been vaccinated in years. And I certainly wasn’t vaccinated against much.  Studies show immunity wanes in 2-10 years. I’ve had maybe seven vaccines. How many adults do you know who are fully vaccinated?

4)  I worked for a pediatrician as an autism family advocate. I did intake for approximately 300 families with children with autism.  I took my story to the CDC.  From what I saw, many of these families and their previous doctors linked vaccines to their children’s issues.   There were no “coincidences.”  Like my family, more than half had autoimmune family histories.

5)  As an activist in children’s health, you meet many moms who have
sick children.  Some of them have kids with autism, some with PANDAS/PANS, some with life-threatening allergies, others with the most terrible of attention/behavior issues, skin issues, learning issues, sleep issues, breathing issues.  Some with mitochondrial disorders, some with genetic issues in the family, some even courageously face cancer.  Because most of these issues can overlap, we may not even see it because we don’t know what “normal” looks like anymore. Children with chronic health issues have become the norm.  Many things can be connected to the declining health of America, but some things stand out:  the uptake in vaccines; the uptake in the use of Roundup and GMOs; the uptake ingeneral use of chemicals with no safety data, making vaccines just that much more potentially harmful. All combining to poison our children.

6)  My son’s issues have improved dramatically from treatment for vaccine injury.  He has been treated for heavy metal burden, immune system dysfunction involving hard to treat systemic pathogens, gut dysbiosis and inflammation.  And his life is going to turn out great, you know why?  We TREATED the vaccine injury.  He was basically non-verbal at four and not toileting at age five. He is now a seventh grader and is fully included.  You can read more about him and our path in the last chapter of The Thinking Moms’ book.

7)  And finally, here’s the rub.  My son’s pediatrician concluded that his autism was caused by his vaccines.  You do not know my child.  His doctor and his parents do.

I am completely aware that this might not be your child’s story.  I am only telling ours.  Our TRUTH.

~ Blaze

PANDAS/PANS Awareness Day

Yesterday was recognized as PANS/PANDAS awareness day in many states across the country.  Hopefully it will gain national recognition as it is becoming more widespread and many doctors don’t even know about it.

P.A.N.D.A.S. is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. It is an auto-immune disease which describes a subset of children and adolescents who have Obsessive Compulsive Disorder (OCD) and/or tic disorders, and in whom symptoms worsen following strep infections such as Strep throat and Scarlet Fever.

PANS is a newer term used to describe the larger class of acute-onset OCD cases. PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome and includes all cases of abrupt onset OCD, not just those associated with streptococcal infections.  Liam falls into the PANS category…as of now.  All of his testing comes back negative for strep but he meets all the criteria for PANS.  Children with the syndrome have the following symptoms:

Abrupt, dramatic onset of obsessive-compulsive disorder or severely restricted food intake.

Additional neuropsychiatric symptoms, with similarly severe and acute onset, from at least two of the following seven categories:

  • Anxiety
  • Emotional lability and/or depression, irritability, aggression and/or severely oppositional behaviors
  • Behavioral (developmental) regression
  • Deterioration in school performance
  • Sensory or motor abnormalities
  • Somatic signs and symptoms, including sleep disturbances, enuresis or urinary frequency
  • Tics both vocal and motor

Symptoms are not better explained by a known neurologic or medical disorder, such as Sydenham chorea, systemic lupus erythematosus, Tourette disorder or others.

I first noticed Liam’s OCD when he was around two and he fell in love with Toy Story.  His obsession with Toy Story resulted in an extreme need to collect every single Woody toy he could find.  There was never a trip to Toys R Us that didn’t result in a full-blown meltdown unless he could get a new Woody toy.  We stopped bringing him anywhere where he could see Woody toys for sale.  Woody was his favorite toy in the world and when he played with him, everything had to be perfect.  He had several of them, all with the trademark cowboy hat.  Cool, right?  Wrong!! Somehow Liam knew which hat went to each particular Woody and if he couldn’t find the right hat for the right guy, his day would be ruined unless we fixed it or found the missing hat.  Those freaking hats gave me so much anxiety it was crazy.  I remember the times we couldn’t find the right hat and trying to persuade him to be ok with a different hat that looked EXACTLY the same.  I had no idea how he knew the difference but he did.  You could say this was just autism but I knew it went deeper than that.

About a year later, I caught Liam washing his hands over and over in the bathroom.  He couldn’t stop.  He repeated the same actions over and over.  You can see the video here.

http://www.youtube.com/watch?v=zLVJw5mMZGE

About a year later, he began having motor tics.  It all started with what looked like a shoulder shrug. He would do it all day, everyday for months.  I could never get a great video of him doing it but you can see an example of it here.

http://www.youtube.com/watch?v=KetZGIDthxw

Shortly after the “shoulder shrug” started, he began moving his nose and mouth just as frequently as he did his shoulders.  We had NO idea what was going on.  It was the end of winter and he had been sick all season long.  Below is a video of his facial tics.

http://www.youtube.com/watch?v=UjrYfbrV394

During this time he started having violent rages, talking about crazy scenarios almost like he was hallucinating.  He started regressing in school and his coloring was like a two-year old.  He would sing and walk in circles and seemed to be out of touch with life.  I remember taking him to Friendly’s and he forgot how to use a spoon.  He was eating mac and cheese (before we started GFCFSF) and was just moving the spoon around his plate, unable to scoop up his food.  I sat there dumbfounded as to what the hell was going on! I couldn’t imagine how he could lose the simple skill of using a spoon.   It seemed like we were losing him somehow.  We had just lost him a year and a half earlier when he was diagnosed with regressive autism and I felt like we were finally getting him back, and now we had to deal with this?!  It’s really scary when your child presents symptoms this drastic almost overnight.  Luckily with the help of progressive doctors, he we was properly diagnosed.  By using Omnicef and other medications, we were able to get him back on track in just over a year.  He still has flare ups and I can tell when it’s happening now and we have to start an antibiotic immediately at an aggressive dose.

Liam  recently went through such a difficult time.  He would repeat number sequences over and over, told me he didn’t live in reality, I wasn’t his mother, he tried to jump out of a moving car and he had those uncontrollable rages again.  My two-year old daughter was afraid of him.  Once we started him on the proper medications, he came back to us.  I know I will have to put him on an antibiotic most of the winter.  I hate having him on it so often but it’s really the only thing that works.

Many children with an autism diagnosis also have a PANDAS or PANS diagnosis. Unfortunately there is not a lot of awareness about the latter but more and more people are speaking out and letting people know about this disease.  To learn more, please go to  www.pandasnetwork.org

AwarenessDayFullSizeFlyer_zps56597180

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M.I.A.

I’ve been asked why I haven’t blogged in a while.  This summer was a shit show with Liam. We are going through a personal situation with him now which I can’t blog about per the advice of our counsel.

For now, I want to share an AMAZING new video with you regarding the overwhelming evidence between vaccines and autism, auto immune disorders, seizures, mitochondrial disorders, and many other medical problems.  Please share.

I would give ANYTHING to go back 6 years and undo the damage vaccines did to my sweet boy.  The stories in this video is my story too.  Even if you only watch the first 10 minutes, you will be blown away.

If you are reading this on a mobile device and cannot see the video, simply click on the blog title and you will be re-directed.

I will write soon….promise. 🙂



October is Vaccine Injury Awareness Month

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When You Know Better, You Do Better

I’ve been dying to go to the Autism One Conference ever since Liam was diagnosed but between moving and being pregnant, it just never worked out.  Finally, the stars aligned and we just made it happen this year!  I was overwhelmed by the candor, unity, and strength of our community.  Sitting in large conference rooms filled with hundreds of moms and dads who were tired, worn out, and searching for answers about what happened to their kids and how to recover them, was saddening to me.  Families affected by autism can feel very lonely and isolated but at the conference I felt surrounded by family.  I could simply look into any of the mother’s eyes and know her story without saying anything.  It was funny how it wasn’t weird to talk to a stranger about your kid’s poop because, let’s face it, all autism moms talk about it all the time.  “What does it look like? How often does he go? Have you tried Carnitine?” and so on.  Our “controversial theory” labeled by the mainstream medical community regarding the link between vaccines and autism wasn’t controversial at the conference.  Virtually every speaker I heard and every parent I spoke to felt the same way.  And for every parent who was at the conference, there were ten thousand more at home who couldn’t be there.  What I found encouraging was most parents there felt there was hope.  There’s such a long list of things to try whether it be Hyperbaric Oxygen Therapy, supplement changes, diet changes and many of us were there finding out what should be next on the list.  We don’t stop until we see results and that’s what I love about the autism community.

Listening to incredible speakers such as Andy Wakefield, Brian Hooker, Mark Blaxill, Jerry Kartzinel and Robert F. Kennedy, Jr. was inspiring and infuriating.  I was angered listening to and seeing proof of the government’s  vaccine/autism cover up and lobbying between Pharma companies and government officials (which I already knew).  The focus of the conference wasn’t just on recovery (although it was a huge part), but it also covered the legal issues, vaccine court, school IEPs and how the media reports and portrays the autism epidemic.  I was inspired to hear about new treatments coming out and the research being published.  I tracked down Dr. Kartzinel and showed him Liam’s latest lab results and asked for advice.  Jon and I had a lengthy conversation with Mary Holland about vaccine exemptions.  It was a great conference.

Next week marks the three-year anniversary of d-day, diagnosis day.  Jon and I try to keep a sense of humor and roll with the punches rather than sulk and dwell on the struggle that it can be.  We have to laugh.  We have to avoid people who say, “I’m so sorry for what you’re going through” and who make the conversation heavy, because honestly, that doesn’t help us.  Liam is a funny, smart, loving kid and autism is just a part of who he is.  He speaks.  That’s more than a lot of parents can say.  But there are times when the frustration of giving my son countless pills every day, making sure every food is gluten free, casein free, soy free and egg free can get a little overwhelming, when I’m fighting insurance companies and the school yet again to get services he needs, and having to hire a lawyer to get the services.  Or like now, when he’s having a P.A.N.S (Pediatric Acute Neuropsychiatric Syndrome) flare up that is making him aggressive, OCD and brought on a thrush breakout.  That’s the sucky part.  We shouldn’t have to deal with any of this because his autism may have been preventable if I knew better.  But as Toni Morrison says, “When you know better, you do better.”

That is one of the reasons I’m writing this blog.

Autism Action

We are halfway through Autism Awareness Month so I figured it was a good time to share my newest video of Liam’s journey.  This year I labeled it as an Autism Action video.  Some of it is the same as last year but I’ve changed some the words and pictures to better convey Liam’s story and to update everyone from last year.  Please feel free to share this with anybody and everybody!!!! Thanks for your continued support.  Hopefully if more people watch this, the more educated we will be.

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