The Appointment

The Appointment

The appointment crept up more quickly than I had expected and before I knew it, Billy and I and Coleman were in the car driving for our overnight trip to “see my friend” (as we told Coleman) in New York.  We had to be at his office at 9 am for lab work and Coleman couldn’t eat for 12 hours prior so we drove up the day before and tried to make it seem like an adventure.  We stopped at a rest stop once we hit New York and took the token NY picture for you all J  He was great in the car and perfect at the hotel, amazing when you consider the girls were not with us.  And in the morning, when he asked for breakfast, we acted all surprised that we didn’t have any waffles, angrily stomping around the room saying “Coleman where ARE they??!!  We better go buy some!” He bought this charade, and laughed as we headed out the door.  I explained that we had to first stop at my friends place so they could “look at his blood – it’ll be a little pinch on your arm.  Very quick”, and then we would get some waffles.  He was ok with this plan until we got there and he panicked over the blood draw.  Although it took three of us had to hold him down, once they got the needle in he was very, very patient waiting as they filled 13 vials.  Being the good, Clampett family that we are, we brought our toaster and waffles with us, so as soon as he finished, we asked to use their kitchen, plugged in the trusty lifesaver, and gave him his waffles.  And all was good.   

The appointment was at 10:30, and we didn’t leave there until after 3.  You would not believe how good Coleman was.  A total champ.  I know my mother was there that day, helping us again.  J    

It was interesting to be in front of Dr. Bock.  He was kind and quiet, and well versed in common autistic symptoms and behaviors.  He was the first doctor I had been to that I felt really understood Coleman, and that gave me a great sense of confidence.  More than that, though, I was beginning to feel hopeful. 

Bock had asked us to prepare a timeline prior to our arrival and he spent a great deal of time going over that, going through Coleman’s history, asking questions, making notes, and asking more questions.  He put several events together that we hadn’t, and after a couple of hours, he put down his pen and told us his thoughts.  He felt fairly confident he could take care of Coleman’s OCD and substantially reduce his anxiety.  He also added that he thought he could help with Coleman’s GI issues, get him off the Miralax, and hopefully help eradicate some of the fog he seemed to dwell in.  And if all of those things fell into place, the structure and teaching he was getting in school and at home would be absorbed more readily and we should see good progress.  He had only one word of caution: age.  “If Coleman was three or four years old, I would say we have a pretty good shot at recovering him.  But he’s nearly 11, and I just don’t have enough history with kids his age to predict a fully successful outcome.  But I know we can make some meaningful progress.”  To be honest, he had me at OCD improvements.  Anything above that, well that was gravy really.  Our biggest issues on a day to day basis involved the OCD and anxiety.  Even in school, the most difficult parts of Coleman’s day still consisted of breaking fast-adopted, non-productive OCD driven routines.  So Bock could have stopped right then and I was in.  And as for age, I wasn’t discouraged.  He didn’t say it wasn’t possible.  He only said he didn’t see enough kids Coleman’s age.  And I could believe that.  Although biomed has been around more than 25 years, in the last 10 years there has been an explosion of growth, due in part to the growing body of research linking gut health and food intolerances to brain health, as well as increased awareness due to the rapid expansion of social media and celebrities like Jenny McCarthy.  But for parents with older autistic children, they already tend to think “it’s too late.”  The idea of trying to change eating habits and add supplements is overwhelming in a child that is a teenager.   But for parents of younger children, the changes are less formidable – it’s certainly easier to start new habits than to try to break long term, old habits in teenage children.

So I hung onto the good news, put the ‘age’ issue on the back burner, and focused on the plan Bock was presenting.    Given Coleman’s complicated medical history, we all agreed that casting a wide net in terms of baseline testing was the way to go, so we did broad, comprehensive blood work and stool samples.  Bock provided a short-term plan until the results came in, largely aimed at starting to heal Coleman’s gut, with some basic supplements, a probiotic, and omega oils.  “Let’s see what we get in the lab work, and then we’ll formulate an action plan.”   We scheduled a follow-up for 6 weeks later, and oddly, I found myself hoping that the blood work would come back with all sorts of problems.  “What if everything comes back completely normal?” I asked.  Bock answered without hesitation.  “It’s not game-over.  There are many paths we can take.  But I don’t think that will be the case.  I think we’re going to find plenty of things to work with in his results.”  And he was right. 

The Book

The Book

Not that long ago, a good friend called me after her young son had been diagnosed with autism.  She was crushed.  “What can I do?” she asked.  I stared into the phone.  Not much I thought.  “Get him in a good ABA program” was all I offered lamely.  It was all I had. 

She called me again several months later.  “Have you read the book on Autism by Kenneth Bock?” she asked.  I laughed to myself.  I was so deep under water that reading a book seemed like a luxury I would never enjoy again.  We had our plate full with Coleman’s behavior problems, OCD challenges, melt downs, and rigidity.  His issues made finding an appropriate baby sitter a challenge, and so our social life was also limited.  We also had Emma’s diabetes and corresponding doctor visits, busy academic and athletic schedules for both girls, and, with both Billy and I working full time, well, we were barely treading water.  “No, I haven’t heard about it” I replied instead.  She told me briefly about the book, and mentioned she thought it could help with her son.  “You should get the book.  It’s pretty interesting” she said. I hung up the phone and went on the computer to Amazon.  I googled  “Autism and Kenneth Bock” and sure enough the book came up.  “Healing the New Epidemic:  Autism, ADHD, Asthma and Allergies.”  I read the summary and thought about it.  I put the book in my cart and closed the computer just as Coleman began to scream because Emma had shut off the bathroom light. 

Another 6 months went by and I hadn’t bought the book.  It was still in my cart but I kept checking the “save for later” button any time I placed an order.  My friend called again and she casually asked if I had read it.  “Just ordered it!” I lied.  I hung up, went online and ordered it.   In two days the book came, and for the next week, I couldn’t put it down.  I was writing notes in the margins, placing post-its on pages, and I dog-eared so many pages that it would have been easier to dog-ear only the pages that I didn’t find important.  That book.  It single-handedly changed me.      

The book is written by Dr. Kenneth Bock, a well-known physician with more than three decades of experience treating patients via “alternative” approaches in medicine.  His expertise surrounds complex, multi-symptom disorders, including Autism.  His approach to autism begins with a belief that autism is a disorder caused by a combination of lowered immune response, external toxins, and problems caused by certain foods.  The treatment protocol commonly includes nutritional supplements, special diets, testing for hidden food allergies, treatment of intestinal bacteria and detoxification of heavy metals.  Sounds wacky, right?  That’s what I thought too. 

Wacky, but fascinating.  He tells story after story of his patients, explaining in detail his thoughts about their symptoms and his multifaceted approach to treatment.  It’s clear that the treatment process is not easy.  He talks a lot about being like an investigator, testing and examining blood results, testing and treating, and repeating it all again, trying to fix one by one each piece of the complex puzzle.  Later, I heard a talk given by another biomed doctor.  He used this analogy:  think of your body like a high tech manufacturing line.  If even one small part breaks, then the machine isn’t going to work.  Figuring out exactly what isn’t working right and how to fix it takes time.  And trying solutions takes time, because the same solutions don’t work on all kids.  But, the important point is that some solutions do work.  And work quite well, it turns out. This approach to treating autism, when combined with behavioral and educational interventions, has actually ‘recovered’ hundreds or thousands of kids from Autism.  In a great many others, it has led to significant improvements.  

I found it particularly noteworthy that Coleman shared a similar history and experienced many of the same symptoms as the kids included in Bock’s book:

·         GI Issues -Coleman has a very long unexplained history of GI issues, including reflux, alternating constipation and diarrhea.  He was tested for Hirschsprungs Disease at about 6 months of age due to his inability to have bowel movements.  He was hospitalized for a week when he was about a year old due to a 7 day fever and enlarged intestine, the cause of which was never determined.  And due to nausea related to the chemo during the Leukemia, he stopped eating entirely and had a feeding tube placed.  G I issues?  Yeah, we got that. 

·         Gluten/Casein intolerance – the theory is essentially that children with autism cannot completely digest some proteins (specifically those in gluten and casein) resulting in undigested proteins, known as peptides, that pass through the intestinal membrane and enter the CNS.  These peptides have an effect like opiates (morphine) in the brain and nervous system, causing disruption to normal neuroregulatory processes.  Long term exposure can have damaging effects on the developing brain.   I didn’t know if Coleman had this issue, but I knew one thing:  Coleman ate a lot of gluten.   

·         History of high antibiotic use - The possible link between antibiotic use on children with low immunity and autism is something I’ve now read about over and over.  Some – not all - kids with low immunity have a difficult time shedding the toxicity and metal from medicines.  Coleman certainly had more than his share of antibiotics.  He faced many bouts of illness, both test-confirmed (bronchitis, strep) and non-test confirmed (asthmatic episodes, aforementioned GI issues), and was treated every time with antibiotics.  And then there was the oh, lets round it out to three years, of Chemo and steroids.  He has even had lifetime doses of some medications.   He can never, ever have some of the medications he had during those three years again in his life because, before he was three years old, he had already had the lifetime allowable dose.  Seriously.  And clearly, since the entire chemo process is to kill of the cancer cells, which at the same time kills off healthy cells, yeah, you could say he received those drugs during a low immune time in his life.  And this is not to mention all the radiation.  To his head.    I was starting to now wonder what effect all of this had on Coleman and if any of it contributed to his autism.

·         Yeast Overgrowth:  I wasn’t sure if Coleman had this, but I was willing to wager a substantial amount of money that he did.  Yeast is present in all of us, and is considered commensal (neither beneficial nor harmful).   But overgrowth of these organisms can have many detrimental effects, including asthma, allergies, eczema, complications in the GI tract, and broad immune suppressive effects.  There have been cases when clearing yeast overgrowth alone is game-changer in terms of progress for kids on the Spectrum.  The first case involved a young girl with autism.  Her parents took her to the doctor for a white film they could see on her tongue.  It was thrush and the doctor ordered Nystatin.  As expected, the girl’s thrush cleared but remarkably so did her autism.  Word among the biomed community spread quickly and soon many biomed doctors began to add this to their regimen – test for yeast, and if higher than normal, treat it.  Coleman had countless cases of Thrush during his chemo days, and still we get the ‘white tongue’ from time to time.  He also has a substantial amount of eczema on his body and arms.  And we fought cradle cap on his head until he was five or six years old.  All signs of too much yeast. 

·         Sudden onset OCD:  Yup again on this one.  Summer of 2012.  It was really when Coleman changed from his easy going, happy little guy to suddenly needing to touch every corner, walk a certain way, go through a certain ritual, repeat exactly what was going to happen in the next hour (again and again) and it was the first time he really hit anyone.  It started suddenly and at first, we thought it was another quirky way of his.  But it very quickly escalated.  His need to touch, move, stand, and repeat things became intense, and the inability to do so set off tantrums and meltdowns, the likes of which we hadn’t seen previously.  It was also the start of problems at school.  Upon his return that September, he began to aggress against teachers and aides when he couldn’t fill his OCD needs (i.e. No you can’t touch every plug outlet as you walk down the hallway).  When the school first told me about his aggression, I honestly did not believe them.  He doesn’t act like that, I thought.  That is not him.  But it had become him.  Seemingly overnight.

There were so many parts of the book that I identified with, I couldn’t possibly list them all here.  I kept stopping and saying to Billy “You have to read this.  You will not believe how much these kids are like Coleman.”  I couldn’t stop thinking about the book after I had finished it.  Could this possibly be true?  The man was a well-respected doctor.  But still.  It really had me thinking.  What if?  I went online and found hundreds and hundreds of stories of people that followed the biomed approach whose children had ‘recovered’.  For many more, they reported major improvements.  And for a great many, they were still hard at work trying.  It didn’t take long to decide.  Within a week of finishing the book,  I made the call to Bock’s New York office.  I took the first available appointment, 4 months later.  And then I waited and prayed.

When You Know

When You Know

A friend confided in me recently about her concerns over her brother’s son.  She was trying to not be intrusive, but every time she saw him she felt like something was just off.  My friend has kids of her own, so she has seen typical development and felt like her nephew wasn’t hitting milestones as he should.  He wasn’t responding to his name, wasn’t playing like most babies do, wasn’t interested in crawling.  She was concerned, and wanted to say something to her brother.  “What should I say?” she asked.  I wasn’t sure, but the entire conversation brought a flood of my own memories. 

Billy and I had taken the girls to Florida and Coleman had stayed with my family.  When we returned less than a week later, the things I had been noticing slowly over the prior months now seemed blatant.  For quite some time, I had noticed that he didn’t seem to respond when I called his name.  He’s just very focused on what he’s doing, I reasoned.   And then I observed his lack of interest in other kids.  He’s independent, I silently cheered.  And then I noticed that he wanted to watch just a tiny section of a single show, over and over again.  And then, that he seemed unmotivated to crawl around and explore.  Even amid a pile of toys.  He’s a thinker, I told myself.  He’s going to be brilliant someday.    And then I noticed how much he perseverated on that one toy.  Every child has a favorite toy, I told myself.  But then I quietly noticed that even with his favorite toy, he was fascinated only with spinning the wheels.  And that, in fact, he liked to watch a lot of things spin.  And that he liked to line things up.  Lots of things. 

It takes a lot, really, to get you to say it out loud the first time:  “Do you think this is normal?”   And then you are defiant and defensive when whomever you have asked says it is not.   “What do you mean?  You just don’t see him enough” you practically yell back.  You spit back to them every rationale, every stretch of a reason you’ve been telling yourself over the past year to explain his behavior.  Your face is red and hot and you are irrationally angry.  Your friend politely tries to back off, but it’s too late, it’s already out there.  The brief conversation ends.   But later that night, when you are alone with your boy, you watch him more closely, willing him to do something that looks ‘normal’.  You lean over to him, and whisper  “Say Mommy, buddy. Say mama.”  But he just stares at you.  “Hey, pal, look at this ball!  It’s so fun to roll like this!!” and you roll it toward him but he just watches it roll and looks away.  And you pick up his favorite toy train and run it along the floor, saying “Chooo chooo!!!   See the train racing by!” and you hand him the train saying “You try it!” and he takes the train but turns it over and spins the wheels with his thumb.  And you know. 

Be gentle with your family and friends when you suspect their child is delayed or having trouble.  Because even when you know, it’s really hard to hear.    And having it confirmed by a formal diagnosis is no picnic either.  Worse still are the days and weeks that follow a diagnosis, because there is so little support medically, that once the news settles in, you are struck by a desperate feeling of having no idea what the hell to do.  And here, I think, is where traditional medicine begins to fail us.       

There is no standard treatment path in place that guides you along this vast, complicated land of Autism.  There is no annual appointment, no at-home follow-up, no clinic follow-up, not even a phone-call follow up.  At your feedback session after the initial testing, you are told gently that your child has Autism.  You are urged to seek an educational program for your child based on ABA (Applied Behavior Analysis) with a substantially separate class.  And that is all.  It is a rather brief meeting.  Basically a pat on the back, tough luck Chuck, and you are on your way.  Autism is a life-long, debilitating illness with multiple biological and neurological comorbidities.  And you are given a 15 minute conversation about it and that is it.  It’s no wonder parents are nearly suffocating under the weight of trying to raise an autistic child.  No one knows what the hell to do.  The parting words “get in an ABA program” are their only hope.  So that’s where most people start.  It’s also where most people end.  It would have been the end for us too, I think, if I hadn’t read this one simple book.  But I did, and that one simple book started a pretty big revolution over here. 

School

School

We finally, reluctantly, made the decision to move Coleman to a new school.  He transitioned at the end of last May, and now, nearly a year later, he is adjusted and doing well.

The change was hard for him, hard for us, and I know hard for the wonderful folks he left behind.  His last day of school at East is one I will forever cherish. 

I had asked his teacher at East to make for him a social story about the going to a new school.  She did it perfectly, and sent it home the following day.  That night, I read through it alone and cried.  “In 10 more days I will be going to a new school.   I will miss my friends and teachers at East school but I will have new fiends and teachers at my new school.  My new teachers names are Maggie and Sam.  In Ms. J’s class I did work and played with puzzles.  In my new class I will do work and play with puzzles.  My new school will be great!”   There were pictures of his current school and his new school, pictures of Ms J and the kids in his class, and a picture of his new teachers.  In my head I could see Ms. J putting together the pictures and the story, trying her best to make this confusing change simple for Coleman.  I know she cried too, putting it together.

We read him the social story every day, several times each day for the 10 days leading up to his last day.  He was somewhat uninterested as we sat going through it and I wondered if he understood what we were trying to tell him.  I realized later that he hadn’t. 

For his last day at East, I had asked if I could come in early to gather his things.  I wanted to bring some snacks for the kids and some small momentos for his teachers.  I also was worried about how he would be on that last day so I wanted to be around.  And I really wanted to say goodbye and thank you to everyone.  I arrived at the school around 12:30, and went to his classroom.  Normally a quiet place, each child working with a para or an aide, the room was a bustle of activity – I could hear the commotion out in the hall.  As I entered his class, I saw a bunch of kids gathered around Coleman, laughing and talking to him.  I went over to Ms. J.  She said a lot of the kids from the other grades had been stopping by to say goodbye to Coleman.  Coleman loved it.  He was smiling away at all the kids, albeit confused about why they were all saying goodbye and good luck.  As soon as that group left, more came.  And again after that.  And in between, teachers and aides and admins floated in.  “It’s been like this all day” said Ms J.  Just about everybody who knew Coleman or who had worked with him had stopped by.  It was as loving and heartfelt a tribute as I could have ever hoped for.  And while it may have all been lost on Coleman, it certainly wasn’t lost on me.   These people who had taught and cared for Coleman for the last 8 years, who had made accommodation after accommodation for him throughout the school, who had watched him grow from a tiny bald 3 year old with cancer to the small but strong 10 year old he was now, had all grown to love him.  It was a tough day for everyone. 

He started the following week at his new school.  Please, God, let this be the right decision, I prayed. The first day went amazingly well.  And when we got home, I understood why.  “Go see Ms. J tomorrow?” he asked with a big smile.  “No buddy, remember you’re going to a new school now” I said as I reached for the social story.  His hand grabbed mine before I reached it, stopping me.  “10 more days?” he asked.  He asks this any time he wants to know when something is ending or coming up.  For example, if he knows he has gymnastics coming up, he’ll ask “10 more days then gymnastics?” and I have to just put in the correct number. “3 more days to gymnastics!” I’ll tell him.  So when he said “10 more days?” I knew what he wanted:  how many more days until he could go back to East.  It was so sad.  I knelt down beside him and said “we aren’t going back to Coley’s old school.  Coley has a new school now.”  He just stared at me, and then said “10 more days?” 

The next day was colossally worse.  His new school was trying to break some OCD behaviors (rightly so) from the start, and Coleman figured out quickly that this was the real deal.  The aggression and tantrums escalated as expected.   By the end of the week, Coleman was exhausted.  He stood in the playroom staring at the T.V.  I walked in and knelt beside him.  “10 more days?” he asked as he started to cry.  Oh God, the pain.  I hugged him and tried not to cry too, and said only “I’m sorry you miss your friends.  I know this is hard. I love you” and I hugged him and he cried gently in a way I had never heard before. 

Things, thank God, have improved since then.  He is wonderful, has completely adjusted, and likes his new school.  It was the right change, but it was goddamn hard.  Coleman still remembers his friends from East, and we hear their names in his scripts every now and then.  In a few weeks we’ll be doing an athletic program for special needs kids and some of those kids and Ms J. are going to be there.  I told Coleman about it a couple of days ago,  and he’s been excited ever since.  Every couple of hours he smiles and says “10 more days for Ms J?”  J    It’s going to be a nice little reunion. 

Coley's First Year in School (Pirate for Halloween)

Coley's last day at East

The Bike Ride

Ok, so now finally to an update about Coleman!!!

I’ll start where we left off last year, just after my mother’s passing.  I can’t believe it will be a year this month that she is gone.  It feels so much longer.  I miss her every single day.  Death is difficult for most of us, but we understand it’s place in the great circle of life.  For Coleman, and I assume many kids like him, he simply doesn’t understand the concept of death or its permanency.  I never told him Nana was gone – I had no idea how to possibly explain that to him.  For a while, I was nervous whenever he saw a picture of her, afraid that he would ask where she was and demand for her to come over.   This happened occasionally while she was still sick.  When we would get together with my brothers and sisters, he would look around and ask “Where’s Nana?”  I tried to explain:  “Nana is sick.  She is in the hospital right now.”  “Go get her?” he would ask.  “She can’t come today, Coleman.”  And then again “Go get her?” which escalated into demands, yelling and crying, begging us to go get nana, to please get nana, and where is nana, again and again.   That first time, when he became upset at her absence, it was the first time I considered the possibility that she might not live to ever come home again. 

Although she is gone from us in a physical sense and I miss her dearly, I have never been more sure that she is with us spiritually.  I can practically see her laugh at some of the crazy things we do for Coleman, and watch her shaking her head in amazement.  And when I doubt things, or hit a wall and think this is it, that things for Coleman will just not get better, I can hear her confident voice, feel her gentle push, urging me along, yes, yes, it will get better, you can do this, HE can do this.  I need her now like this more than ever.  And I think she knows it, because she wasted no time at all in helping me, starting on the day of her funeral.    

It was beautiful day, sunny and cool, just as she would have liked.  After the mass, we met friends and family back at a hall to celebrate her life as good Irish folks often do.  Sue kept Coleman at home and brought him to the hall after we had a chance to catch up with some old friends.  Coleman wanted nothing to do with a hall, too many people, too loud and unfamiliar, and he was dragging my hand to get out only minutes after he had arrived.  So we left and arrived to the empty quiet of our house.  It felt unfamiliar and uncomfortable, like none us knew what to do next.   “Want to go for a bike ride Coley?” I asked.  Coleman loves bikes.  His favorite bike is a Taga bike that my mom had bought us a couple of years ago.  A fancy European model that was ridiculously expensive, it’s shaped like a tricycle for adults, with the traditional seat for me, and a big seat on the front for Coleman.  He loves to ride up front, especially to go fast, which is hard for this out-of-shape mama.  J  Today, I wasn’t talking about the Taga.  I was talking about his real bike.   He hadn’t learned to ride it yet, simply could not grasp the concept of continuous motion.  I spent many days, summer after summer, crawling along the ground, pushing his feet around in a circular motion, showing him how it was done.  I tried Velcro straps, strapping his feet to the pedals, but he just couldn’t do it.  He would push for half a stride, and then stop.  I would grab hold of his foot, move it forward and push him again and, half a stride later, stop again.  Time after time, to no avail.   He just didn’t get it.    

But today, on the afternoon of my mother’s funeral, I wanted to get out of the house.  So I dragged out the bike and placed it in front of Coleman.  I then grabbed his helmet, knowing this would be the first obstacle.  I approached him with it, saying in a happy sing-songy way “First we have to wear our helmet to be safe!”  And do you know he put that dang thing right on without a fuss?  Never, ever would he wear it before, not even on the Taga.   Well, I thought.  It must be from skiing last year.  And that was that. 

We moved toward the bike and l lifted him onto it and wheeled him out to the street.  I knelt to the ground and put his feet on the pedals.  As I moved his foot and the pedal, I said  “See push this foot down and….” And nothing because that little bugger took off!  Pedaling like he had been doing it for years.  I shit you not.  I screamed back to the house for the girls and Billy to come see, and we all grabbed cameras and videos and shrieked over his amazing skill.  And then I felt a chill.  Not a cool breeze kind of chill.  This was my mother at work, I suddently sensed.  I was sure of it. First the helmet, and then the bike.  I could just picture her, pushing people out of her way so she could see what was going on down here, grabbing hold of the magic wand or whatever the heck those angels use, and simply shaking it down on Coleman like Tinkerbell shaking pixiedust all over Peter Pan.   “Enough of this. I’m here now” I pictured her saying.   And just like that, Coleman learned to ride a bike. 

We rode every day from then on, even into the very cold days of winter.  He became stronger and better at it.  We have a route to the mailbox on Main Street which is about a mile from our house, and we ride multiple times on the weekends.  He loves it. It is by far my favorite thing he learned to do this year.  And every time we ride, I think of my mom.  Gone in flesh, but so very present in spirit.

GMOs, Vaccines and Pesticides

Well I had every intention of posting yesterday for World Autism Awareness day.  We were heading to a fundraiser last night with friends from high school, so my plan was to do it afterwards.  We were going out early, I reasoned, so I’d have plenty of time to do it after we returned.  Well, I’ll just say things got a bit out of hand, and apparently we are now going to Vegas in October. J   Anyhoo, here is the post I had intended to write yesterday.  And Billy will not be happy with me as it is far from brief.

I know right now that this post will not will me any fans.  It’s not a Coleman specific story, which is why I had originally targeted it for World Autism Awareness Day.   I wanted to talk about some of the factors that influence autism…but there are so many.  Please remember I said that:  There are many factors that influence autism.  I’ve picked three to talk about here, in part because they are actionable – they are factors that you can consider in your life, or factors that your own children can consider as they become adults.  But I am not saying these are the only ones. 

GMOs

Given how much I like to eat, I figured I would start with the food chain.  J  GMO’s are ruining us my friends.   GMO’s (or “genetically modified organisms”) are living organisms whose genetic material has been artificially manipulated in a laboratory through genetic engineering.  Virtually all commercial GMOs are engineered to withstand direct application of herbicide and/or to produce an insecticide.  For example, more than 80% of all corn now contains its own internal insecticide genetically engineered into its DNA.  Despite biotech industry promises, none of the GMO traits currently on the market offer increased yield, drought tolerance, enhanced nutrition, or any other consumer benefit.  The long term effects of GMO are not known, but there is evidence that questions their safety.  Since the introduction of GMOs into the food supply in the 1990’s, allergic reactions have skyrocketed.  For example, widespread GMO soy was introduced in 1996, soy allergies have dramatically increased.  Likewise, peanut allergies (peanuts are in the same plant family as soy) have risen 20% each year starting in 1997, the year after GMO soy starting being widely consumed.  In 1999, the prestigious medical journal The Lancet reported that despite a presumption that GMO foods pose no risks compared to their conventional counterparts, there are “good reasons to believe that specific risks may exist”, concluding that “governments should never have allowed these products into the food chain without insisting on rigorous testing for effects on health.”   Because more than 80% of corn and 90% of soy is now genetically modified, and since most infant formulas contain both corn and soy, many children are having very early exposure to GMOs that may be disrupting their systems.  Gluten intolerance and Celiac disease have also grown exponentially, and it is estimated that Celiac Disease diagnosis rate may reach 50%-60% by 2019. Is it a coincidence that many kids with autism have gluten intolerance?  Is it coincidence that the very large majority of kids on the spectrum have GI issues, and can we not wonder about the correlation between GMOs and gut issues?  Coleman specifically has a long history of GI issues which began when I stopped nursing him.  I found nursing difficult to keep up after my 3 month maternity leave, working full time with two other children to care for.  Coleman developed reflux and stopped pooping.  The doctor suggested a soy formula for Coleman which he used until he stopped using a bottle.  We then moved him to Soy milk.  Interestingly neither of these products solved his GI issues.  GMOs are now considered unsafe across the globe.  In more than 60 countries around the world, including Australia, Japan, and all of the countries in the European Union, there are significant restrictions or outright bans on the production and sale of GMOs. In the U.S., however, the government has approved the use of GMOs.  Sadly, the decision was based on studies conducted by the same corporations that created them and profit from their sale. 

Pesticides

Aside from the actual GMO crops themselves, a further issue is the use of pesticides on our crops and their impact on our health.  Pesticides were developed during World War II as scientists were trying to find better ways to kill people.  They learned to develop effective nerve poisons and the U.S. manufactured it in large quantities.  But the war ended before we could use all of the poison that had been developed and we ended up with warehouses full of it.  Rather than waste it, chemists reconfigured the compounds in much lower doses so they could use it to kill insects and other pests.  So, a chemical originally intended to kill people is now being ingested by people in very small doses.  Sound like a good plan?  Would you give it to your newborn, even if they said “Its ok- we don’t have any evidence that it will do any harm in these tiny doses”??    Organophosphates (the most commonly used pesticide in the US) work by inhibiting cholinesterase in the nervous system.  This process disrupts acetylcholine (a neurotransmitter) and ultimately impacts muscle control, motor function, behavior disturbances, and a lack of coordination.  Hmm, sounds eerily similar to autism symptoms.    

Though the EPA banned household use of most organophosphates in 2001, over 33 million pounds are still applied for agricultural and commercial uses each year. There have been several studies published linking exposure to organophosphates to ADD/ADHD and to higher risks of autism.  One study by the National Institute of Environmental Health study found that children whose mothers lived within a mile of fields treated with organophosphate pesticides during their pregnancy were 60% more likely to develop autism spectrum disorders than children whose mothers did not live near treated fields. Additionally, children whose mothers lived near fields treated with organophosphate pesticide, during the second trimester of the pregnancy were 3.3 times more likely to develop autism.  And yet another study in the medical journal Pediatrics published results linking pesticides to ADD/ADHD.  Most of us can handle small amounts of toxins without noticeable effects, but there exists in all of us a limit.  When that limit is surpassed, our body is unable to detoxify, and those toxins burden our system in unique ways.  Which leads me to vaccines. 

Vaccines

Ah, the highly debated and super controversial topic of vaccines.  I will win no fans here I am sure, but this isn’t a popularity contest.  I will say first that I am not anti-vaccine.  I had all of my kids vaccinated according to schedule.  That was before I actually did a bit of my own research.  Still, I support vaccination.  But I believe we should all fight for an open and honest discussion about vaccine safety, we should question the incestuous relationship between CDC and pharmaceutical manufacturers and insist on non-biased review of any new vaccines by independent boards without conflicting interests, and we should closely re-examine the vaccine schedule and re-consider the one size fits all approach that the current schedule seems to support,   

The discussion about vaccine safety is hardly honest.  Anyone who questions vaccines is suddenly labeled “Anti Vax” and viciously characterized as “crazy’ and ‘irresponsible’ which you guys will all probably label me after this!  But in this age of the Internet,  you can do your own research.  You should understand that being concerned about vaccines is not the same as discounting the dangers of infectious diseases.   Vaccine safety starts with the manufacturer.  But the fact that pharmaceutical companies are indemnified by the government against liability certainly removes the incentive from the companies to supply the safest, most effective vaccines possible.  Instead of suing the companies directly for injuries sustained from vaccine, there is a special vaccine court that compensates the very few patients who can prove their injury beyond a shadow of a doubt. The National Vaccine Injury Compensation Program has paid out over 3 billion dollars to date.   But vaccines are “safe”. 

And the incestuous relationship between the CDC and the vaccine manufacturers is appalling.  According to Robert F. Kennedy Fr, “There have been four separate, scathing, federal studies by the United States Congress: a three-year study by Congressman Burton, a follow-up study by Senator Coburn’s committee, another study by the inspector general of the Department of Health and Human Services (HHS) in 2008, and a study last year by the Office of Research Integrity of HHS. All of those studies paint the CDC as an absolute cesspool of corruption, as an agency that has fallen under the spell of this trillion-dollar Big Pharma industry. Instead of serving its primary mission, which is to protect public health, its mission now, according to these federal studies, is to serve the mercantile interests of the vaccine industry. “ 

Now consider that many of the studies to review the link between autism and vaccines have been funded by these two groups.  Fox minding the henhouse much?  The two most oft cited studies supporting vaccine safety are Madsen, 2002 and Destafano 2004.  The Madsen study, which supposedly compared vaccinated to unvaccinated children, was co-authored by Paul Thorsen, who is on the US Government’s most wanted list for fraud.  Thorsen is a co-author of 22 papers on autism and 5 papers on vaccine safety that still stand and are widely referenced by other authors. Thorsen lives happily in Denmark and continues to write scientific papers today.  Why is someone on the FBI’s “most wanted” list for defrauding the CDC of over a million dollars being left alone in Denmark?   More importantly, why does the Department of Justice continue to cite Thorsen’s Research?  It is unreal that the very Justice Department responsible for indicting him and for prosecuting his case, continues to use papers he co-authored to substantiate legal decisions that absolve vaccine damage. 

The other study was Destefano 2004.  One of the authors of that paper was Dr. William Thompson, who was granted official whistleblower status and immunity, alleging that the authors manipulated data to cover an association between vaccines and autism in African American males vaccinated before the age of 36 months. The other author was Dr. Frank DeStefano, the CDC Director of Immunization Safety. Investigative journalist Sharyl Attkisson posted a recorded phone call she had with Dr. DeStefano.   In this interview, Dr. DeStefano admitted that the CDC omitted a large group of African American children based on the absence of birth certificates.   Both of these studies are in good part the basis for the “indisputable” science you hear about ‘debunking’ the link between autism and vaccines.  Sound credible to you?

For me, my belief in a link between autism and vaccines is not based on science.  I personally base my opinion on the literally thousands of moms and parents whose child was hitting all of their milestones on time until they got a round of vaccines at around 18 months of age that led to a sudden and definitive loss of all the child’s previously acquired skills and ended  with a diagnosis of “autism”.  These parents tell the same story, eerily similar, over and over again.  I just don’t believe that thousands of parents are wrong.  Plain and simple.  As parents we know our kids.  We know when something changes.    We should demand further studies into vaccine safety.  Within the total NIH budget, less than 1% of a>$30 billion budget is spent on autism research. 

The other debatable issue of vaccines is the schedule.  The US childhood immunization schedule requires 26 vaccine doses for infants aged less than 1 year, the most in the world.  Surprisingly, despite this ‘protection’, 33 nations have better Infant mortality rates.  Do we really need all these vaccines?  I commonly hear the comment “I had all of my vaccines and I’m fine.”  Well consider this:  when I was born the total doses of vaccines given from birth to 18 years was about 5.  In 1983 it was 24.  In 1986 pharmaceutical companies were given, by Congress, immunity from lawsuits.  And things changed.  The number of vaccines skyrocketed.  Today there are 69 doses of vaccines.  We seem to be vaccine crazy.  We should be confident that the CDC advisory committees that make the decision to add new vaccines to that schedule would be independent scientists with nothing to gain from a successful introduction of that vaccine.  But that’s not the case.   In 2008, the  Inspector General found that virtually all of the members of those committees had financial interests with the vaccine companies.  Make no mistake – vaccines are profit centers – they make products that the federal government orders people to buy.  Without independent oversight, we will continue to add unnecessary vaccines and put our children further at risk. 

Take for example the Hep B vaccine.  Why are we giving newborns with no risk of infection this shot??   Can we please question the wisdom of giving a vaccine for a disease transmitted primarily through sexual activity and dirty needles?  Worse, there have been studies linking the Hep B vaccination to autism.

What about the chicken pox vaccine?  The chicken pox was simple illness when contracted in childhood.   Once contracted, you had lifetime immunity.  But this vaccine is an example of setting people up for waning immunity when they are older.

What about the flu shot which (at least until very recently) still contained mercury?  The current CDC recommendation is “Everyone 6 months of age and older should get a flu vaccine every season.”  Forget that the Cochrane Collaboration made it clear that there is no evidence that flu shots are effective at all in children under two.  And forget they have never been studied in immunocompromised people. 

Finally, how about the HPV vaccine?  Will you let your teenager assume the risk of developing overwhelming autoimmune illness in order to cut the risk of death by cervical cancer (30-40 years away on average) by 0.5%? And what about the growing list of countries where criminal lawsuits have been filed against manufacturers of the HPV vaccine, including Spain, France, India, Japan, and many more.  What about the study done in Australia by a doctor after several patients who were teenagers became menopausal after the vaccine?  Still feel confidant it’s safe?    

I am not suggesting anyone stop vaccinating.  I only ask you to do your own research and demand safe products. Space your vaccines out.  Never give Tylenol before or after a vaccine (it depletes glutathione, the body’s chief detoxifying agent).  Most of all, whatever you think about vaccination, think long and hard before you endorse the idea that the government should be able to mandate a profitable but invasive medical procedure without informed consent. This is the very basis of medical practice and abandoning consent sets a very dangerous precedent.  This is about your freedom to choose what goes into your body and your child’s body.  Don’t give that up. 

For me, I'll never know what caused Coleman’s autism.  I’m sure it was many, many contributing factors, including those talked about here.  What factor exactly pushed the toxic tipping point beyond manageable for Coleman?  I don’t know.  But if I knew then what I know now, I would have done some things differently that is for sure. 

Now I promise tomorrow to start on true Coleman updates.  J

Welcome to Year #3!

Hello there and Happy April, Year 3!! J

Thank you for joining me again this year!  If you are new here, each April I write this month-long blog in an effort to promote understanding and acceptance of autism.  It provides a short peek into what our life is like living with Autism.  This is Coleman’s story, and the story of 2 parents and 2 siblings doing their best to live with him, to care for him, to teach him, and to love him. .  It’s reflects our trials and tribulations, regressions and progressions, and a small glimpse into our hopes and fears.   

We’ve had a busy 12 months over here, filling our cup with all sorts of new and daring things.  I’m sure you will find some of them boring, some of them fun.  I will do my best to recall all of our important moments.  I did not, however, keep a running diary as I promised.   Seriously, you should know me better by now.   But alas, all is not lost, since I did manage to keep a few notes.  Further, since I am intricately involved in this day to day drama, I’m quite sure I can come up with the highlights (said the girl with an embarrassingly poor memory.)

I will try to keep my ramblings a bit shorter than in the past (hubby’s constructive criticism suggested they were a tad too lengthy) and while I won’t hit every day this month, I will work to post something every other day or two.  I do fear that this year will not be as ‘fun’ as prior years – you all have come to know Coleman fairly well, and while we are moving forward, our pace is intentionally slow.  The changes we are undertaking are purposeful but gradual.  We are excited and optimistic about what we’ve got going on, but if ever there was a case for the tortoise over the hare, this is certainly it.  Slow and steady is what we’re after, and that type of activity doesn’t lend itself to great story telling, I’m afraid. 

Still, I’ll do my best to keep it interesting and fun, and when the month passes, you’ll be up to speed on all our craziness.  And you’ll thank your lucky stars that you don’t live with us. J

Thanks again for tuning in.