Thursday, January 31, 2013

Do Vaccines Cause Autism? NO!

Do Vaccines Cause Autism?  

Shortly after my youngest son was born as I lay in the hospital waiting for my newborn to come back from the nursery, a nurse asked me if I was planning to vaccinate my baby.  Yes, of course I am.  She proceeded to tell me about the connection between autism and the MMR vaccine. She also recommended against vaccination.  I disagreed and she dismissed it and told me to investigate it.

She didn't realize that I had already investigated it.  At that point in time our son with autism was 5 years old.  He was still essentially non-verbal but making progress.  I could still take him with me to buy his older brother's birthday present and have no worries that the surprise would be ruined.  I did not want to do anything that would cause this newborn baby to suffer as Gabe had.

This nurse didn't realize I had worked in immunology labs for several years.  I had studied the human immune system and done research on influenza vaccines.  I knew all about the reasons for immune responses and worked with mice that had severely compromised immune systems.  After Gabe was diagnosed I studied the literature.  I studied the scientific literature.  I did not rely on actors, mass hysteria and the media.  

I also knew what would happen if I didn't vaccinate and many others didn't as well.  There is a scene in the movie "John Adams" that illustrates how precious a gift our vaccinations are.  During the time of the Revolutionary War, small pox was prevalent.  To help protect her children from small pox, Mrs. Adams had them infected with a small part of live small pox.  The children got sick and all eventually recovered.  We have come a long way from that crude form of protection.  Yes, people died from the vaccine but far fewer than died from the disease.  It was a risk they were willing to take.  The alternative was a high probability of death from small pox.  

Autism Inc.: The Discredited Science, Shady Treatments and Rising Profits Behind Alternative Autism Treatment

This article summarizes my years of research.  The article that linked autism and MMR vaccines was discredited and the researcher stripped of his credentials.  That article caused a great deal of independent research into the topic which found no link.  People say' "He started showing signs at 18 months after the vaccine." 

One of my professors drilled into our heads, "Correlation does not equal causation".  Just because two thing happen at similar times or following one another does not mean that they are in any way related.

I would actually like there to have been a link.  Just think about it.  If there had been we would be well on our way to significantly reducing the number of children diagnosed with autism every year.  The number continues to rise despite all the changes to the vaccines.

I have my own theories.  My son's type of autism is hereditary.  It comes from my father's family.  It is aggravated by the environment.  Many of the things that over-stimulated my son and caused problems were not part of the world to generations ago.  As my son has grown, he has been able to learn to deal with many of the things that make his life more difficult.  This is only one type of autism.

Until we are able to tease apart the various types of autism that are totally unrelated to one another, we have no hope of finding a cause.  In other words, there is no single cause because it is not a singular disease.  It is a syndrome comprised of an unknown number of separate conditions each having its own cause and effect. Striving for Independence: Ways to Help Children with Disabilities Learn to Function More Indepedently eBook: Kristan Payne: Kindle Store

Saturday, January 26, 2013

Push Kids with Autism Out of Their Comfort Zone. Push Until Hit or Bit!

His First Win! I was too excited to hold the camera still.
Look what his comfort zone includes now!
Push Them Out of Their Comfort Zone. Push Until You are Hit or Bit!

That was the philosophy of a psychologist from Bittersweet Farms, a residential and vocational training program serving adults with autism in Northwest Ohio.  My husband and I attended the NW Ohio Autism Summit in Bowling Green, Ohio just months after our son was diagnosed with autism.  It was during this conference that we heard this advice.

"Until hit or bit" sounds harsh at first.  It sounds cruel.  As he talked, it started to make sense and be the only rational way that any of us grow.  Bittersweet Farms helps the clients progress by challenging them to try new things.  The challenges need to be achievable but none the less challenging.  They need to be pushed out of their comfort zone.  

They really don't want to be "hit or bit".  It is just a way of saying that unless people are pushed to do things that they don't want to do and to try new things, progress will never be made.  People with autism generally do not seek out new experiences or attempt new activities unless pushed to do so.  It is our role as parents, teachers, therapists and counselors to push them.

"Until hit or bit" was a phrase that ran through my mind often during those first, rough years.  It gave me the courage to push Gabe out of his comfort zone.  Each time I met with resistance, I knew it was perfectly normal and good.  It meant that I was challenging him to grow.  Each time it expanded his comfort zone just a little bit.  Now his comfort zone is huge and encompasses activities I never imaged such as wrestling.  The child who could not stand to be touched is now a wrestler.

 Chaos = Growth

Continually pushing for improvement is not easy.  It made life chaotic and noisy.  Whenever the house was quiet for too long, I knew that a challenge was needed.  Gabe needed to be pulled away from his trains or the sandbox or the sink and into another activity.  Yes, he was happy in the sandbox and I did let him enjoy it but not for hours and hours.  He would do the same activity all day if left to his own devices.  

Gabe's comfort zone was very small as a preschool child.  Routine was very important to him.  The world is always routine and he needed to learn to adapt to the unexpected.  I develop a habit of purposefully changing things.  I moved furniture.  I changed the order of bedtime routines.  We did all the same things but not always in the same way or in the same place.  I called it "Same, Yet Different."   This is not easy for me to do.  I like routine also.  Routine is comforting and easy.  Change and forcing change is uncomfortable.  

The rewards of using this philosophy?  Gabe's teachers no longer complain that Gabe doesn't transition well and has trouble with any change in the day.  Substitute teacher?  Two hour delay or early release?   No problem!  I find I still need to practice this with him.  Last week his younger brother wanted to be dropped off at school first, a definite deviation from our routine.  Gabe fussed.  I wasn't going to drop the little one off that early but since Gabe fussed about the change in routine, I did.  On the trip from the elementary school to the high school we talked about flexibility in routines.  Now Gabe can rationally discuss and understand my methods.

What is your "comfort zone"?  

This advice does not just apply to people with autism or some other sort of disability.  It applies to all of us.  Trying new things goes against human nature.  We are creatures of habit.  Traditions are so strong and pop up so rapidly because we like routines.  We like knowing what to expect.  Change and the unknown scares us.  Everyone of us!

As a parent, I have had conflicts with schools about my children both typically developing and disabled.  I have been told many times not to push the issue because nothing will change.  It will only cause problems.  The problems already existed.  I will push people out of their comfort zones to make the world a better place for my child and all children. It would be easier to just "go with the flow" but no change will ever occur that way.   If I am "hit or bit" in the process, so be it. Striving for Independence: Ways to Help Children with Disabilities Learn to Function More Indepedently eBook: Kristan Payne: Kindle Store

Saturday, January 19, 2013

In Your Weakness, In Your Strength...
In Your Weakness, In Your Strength...

A couple days ago I tweeted this: "In your weakness, in your strength I have seen God's Face." from On the Wings of Grace by Jim Strathdee  

Strathdee Music

My apologies to the Strathdees if I am misquoting the song.  More than 30 years ago, they sang at a youth conference in the Episcopal Diocese of Ohio.  I do not remember anything specific from that weekend except for the joy their music brought us.  My sister and I bought some of their recordings and listened to them until we broke the tape.  Since then, the only place I hear the song is in my head.  

I loved many of the songs but for some reason this song stuck with me more than the rest.  It is a very sad song about two nuns in Argentina who were kidnapped and tortured but only one survived. The line "in your weakness. in your strength I have seen God's face" echoed in my head for years mainly because I didn't understand it.

Seeing God's face in our weaknesses?  How is that possible?  Wouldn't He only be in our strengths?  It is starting to make sense.  We only really learn from our mistakes, our failures.   When life rolling alone smoothly, we are not challenged.  When we fail and our weaknesses are exposed, we can turn to God and grow.

It is also in our weaknesses that we can better relate to others.  No one likes to admit failure but when we do, others can learn that they are not the only ones facing difficulties.  It is very easy to convince ourselves that we are the only ones dealing with problems.  Everyone else's lives look perfect.

Reality is much different.  During times of stress, I have often found myself singing this song to myself.  I am not sure why but I would start singing it without conscious thought.  Every time I found my burdens eased.

Thank you Jim and Jean Strathdee!

Autism Cured? Hope & Frustration

From a time when we were very worried about his future: 2007

Much buzz around the internet lately relates to a recent study that a small percentage of children diagnosed with autism recover. (follow this link to the New York Times Jan. 16, 2013 Article)  This provides hope for many but frustration and disappointment to so many more.  For parents whose children were recently diagnosed, it offers a glimmer of hope.  Some children do overcome their diagnosis.  As my son says, "I have autism but it doesn't have me."  It has taken many years of hard work for him to be able to articulate that thought and for it to be accurate.  Gabriel controls his autism.  His brain still functions differently but he can and is part of our world now.

This same article can cause frustration, anger and self-doubt in parents whose children are not "recovered" or "cured".  I remember the desperation and thinking that if I make the wrong choices for Gabriel, he may never be independent.  I remember worrying what would happen to him after his father and I were gone.  The fear that he would be abused or led into horrible situations has just recently ceased to be overwhelming.  

I know other children with autism who are not as high functioning as Gabriel.  I wonder if that would be Gabriel if I hadn't pushed him so hard.  I wonder how the parents feel.  I know I would be angry that some kids are recovering and mine isn't.  I would be analyzing every choice I made and everything the schools did or didn't do wondering where we went wrong.  I would second guess every decision I ever made.  

Reality is that there are many totally unrelated conditions labeled "Autism".  This leads to confusion and frustration.  Some of them respond to Early Intervention and intensive therapy.  Some children can be "totally autistic" in preschool but function relatively normally as high school students.  If we can learn to distinguish between the different forms we can learn to find actual causes and, more importantly, effective treatments.  

Why are some children with autism aggressive and some not?  May not be the same condition causing the autism-like symptoms.  Years ago I used the analogy of two people being unable to walk.  Crutches may help both of them be mobile but what is the real cause of the problem?  If one has a broken leg, it can be set.  In time that person will not need crutches but may walk with a limp.  Another person may have lost a leg.  No amount of therapy and time will allow this second person to be free of the crutches.  

With intensive long term studies and statistical analysis, we might be able to separate the conditions and stop using the same term for all of them. 

Thursday, January 17, 2013

Taco Bell, Taco Bell, Taco Bell

This has nothing to do with the post.
I just found it while "cleaning" my computer.
Taco Bell, Taco Bell, Taco Bell....

This refrain echoed through our house for weeks.  It was heard at preschool, too.  Gabe's teachers commented about how much he loves Taco Bell.  Funny, we never ate there.

This was just one example of Gabe's echolalia.  He would just repeat words or phrases that had an interesting sound to them.  "Taco Bell" does have a nice sound and could be considered fun to say.  I guess.  Gabe was 3 years old at this point and most of the words that came out of his mouth had no relevance to the world.  He wasn't using those words to communicate his thoughts, his needs or his ideas.

At the urging of his speech therapist, we used this repetitive behavior to help Gabe build his communication skills.  She taught him a simple "Knock, knock" joke.

"Knock, knock"
"Who's there?"
"Boo who?"
"Don't cry. I'm here."

It took a while but he learned this and loved hearing the sounds.  He also got used to the back and forth nature of the joke and conversation.

That spring when Gabe was 3 1/2 years old, he said three little words that made me cry.  One night as we were doing our nightly ritual of trying to get him to stay in bed and sleep, Gabe turned to me and said, in his best Donald Duck voice,"I love you."  He probably had no idea what he was saying.  He was just mimicking a Disney commercial that ran frequently at that time and liked the silly voice.  

The meaning of words came later.  We worked to encourage language and stop the random repeating of words.  One day while at a play date with another child with autism, Gabe started with the current favorite phrase.  I stopped him and redirected him to something else.  The other mother asked if I knew that echolalia was part of autism.  I did.  I just wasn't accepting it as an appropriate behavior.  

Now Gabe's speech and language is not much different from any other high school kid.  He talks too much sometimes and not enough others.  He tells bad jokes that he learns from his coaches.  

Everything that Gabe says now has meaning.  He is communicating and interacting. Striving for Independence: Ways to Help Children with Disabilities Learn to Function More Indepedently eBook: Kristan Payne: Kindle Store

Ignorance & Wisdom

Ignorance & Wisdom

Yesterday morning I had a moment of inspiration. 

Ignorance: closing your mind to the possibility of error.

Wisdom: admitting fallibility and seeking to correct errors in thoughts and actions.

Monday, I was the substitute teacher in a third grade class.  We read a paragraph describing first person narrators and third person narrators.  As I listened to the students taking turns reading, I noticed an error.  

I asked if anyone noticed a problem with the paragraph.  Hands went up and ideas flowed.  Mostly they focused on the content which is what we normally do.  I asked them to just look at the words, not the meaning.  The word "narrator" was used four times.  Three times it was spelled one way and the fourth time it contained an extra letter.

I explained to them that this paper was written by a group of well trained and well paid (I hope) professionals trying to do their best.  It was also edited and checked by another group.  The misspelling somehow slipped through anyway. 

We all make mistakes.  Even people who are working hard and trying their best make mistakes.  It is counterproductive to refuse to consider that you could be wrong.  Some errors are small and relatively harmless like the misspelled word.  Others aren't so harmless.  Many of the problems I have right now stem from the fact that some people refuse to admit error or even the possibility of it.  

I wrote more but it just sounded preachy and self-righteous.  So, I deleted it.

Sunday, January 13, 2013

The Wonders of Fish Oil

Rainbow Glass Anglican Rosary (Protestant Prayer Beads)
I have always been leery of giving medication to my kids. Cold and flu medicine, vaccinations and Tylenol are great.  Ritalin type medications worry me.  I am not sure we understand the long term effects well enough.  Gabe had a bad reaction to Zyrtec (allergy medicine) when he was about 3 years old.  

In using medications, we would not be sure if Gabe was learning to control his autism or if it was just the drugs.  Since he didn't have any dangerous behaviors, I didn't want to medicate him.  When he is an adult, he probably will need and anti-anxiety medication just like his mama but those medicines can have unpredictable effects on immature brains. 

When Gabe was in first grade, I heard about fish oil. I do not remember where or when or what I heard.  I just know that I started giving Gabe fish oil every day.  He took one capsule a day.  This was not a mega-dose or even a regular adult dose.  Adult dose was 3 a day.

For some reason, I never mentioned the fish oil to my mother.  After Gabe was taking the fish oil daily for a few weeks, Mom(Grandma) came for a visit.  She asked what we were doing differently with Gabe.  He seemed calmer.  The only thing was the fish oil.

He has taken it regularly since.  Now that he is 6'3" and 155 lbs, we need to increase to the full recommended dose.  Change is hard to remember after so many years.

Fish oil is recommended for everyone and I have started taking it and giving it to my other sons as well.  The benefits are many and since we are not taking mega-doses, it should do no harm.

Toe Walking: Read This Before Correcting!

Red Coral Anglican Rosary (Protestant Prayer Beads)
Everyone knows that children with autism walk on their toes because it is a sensory or stress issue, right? WRONG!  

Like many young children with autism, my son tended to walk on his toes and it seemed to be more pronounced when he was stressed.  We discussed it with teachers, therapists and doctors.

The consensus: 
1. Stretch the Achilles Tendons with exercises.
2. Practice walking "correctly".

We did and after years of practice, in the 4th grade he was finally walking "correctly".  In the 3rd grade, Gabe's arches were fallen and we went to a podiatrist.  He got inserts into his shoes.  I have flat feet and so does my father.  I didn't think it was anything unusual.

In the spring of his 5th grade year, I saw Gabe run across the yard barefoot for the first time in months.  He could not run anymore..  His arches had fallen so much that they looked inverted.  How was that even possible?

Thus started a series of visits to various doctors.  The first of which didn't even look at his feet.  He just said, "Check to see if the insurance covers new inserts."  Next we went to pediatric specialists who prescribed physical therapy followed by new inserts.

His feet continued to get worse.  Gabe could not walk for any length of time without pain.  There were callouses were his arches should be.  I called another doctor.  He took one look at Gabe's feet and said he couldn't help.  Only a few doctors in the country can handle Gabe's issues.  He asked if Gabe had been a "toe walker".  

Gabe's toe walking had more to do with his Achilles Tendon being too short than his autism.  When we "corrected" his walking, all bones in his feet shifted out of alignment.  The only way to correct it was surgery.

We were very fortunate that one of the doctors dealing with this type of problem worked a little more than an hour away. Gabe's 7th grade year was spent reconstructing his feet and doing physical therapy to rebuild strength.  Gabe could not attend school for months.  He might have made it back sooner if his classes had been handicap accessible. 

Gabe's surgeries were fairly extensive.  The surgeon lengthened the Achilles tendons, used bone grafts and pins (at least 13 per foot) to put the bones in the correct spots.  If we had seen the doctor when Gabe was still a toe walker, lengthening the tendons would have been sufficient.  That is relatively minor procedure in comparison.

Good News!  Gabe can walk without pain.  He also runs track, wrestles and plays football.  

I feel horrible about the surgeries and not thinking there could be another cause other than autism for his toe walking. 

Please consider other causes for "autistic behavior"! 

Thursday, January 10, 2013

Answers & Judging Others

My "Flower"
I should probably have written this post first.  

I do not have all the answers when it comes to autism, disabilities, special education, or child rearing in general.  I do not judge parents who have taken other approaches and made other choices.  As long as we keep trying to make educated decisions for our children, no one has the right to judge.  

What worked for us might not work for your child.  We never had "head banging" as an issue.  I can't even begin to imagine how I would have dealt with it.  Thirteen years ago my only knowledge of autism was the movie "Rainman" and I could imagine having a child with special needs.  As parents, our lives change in an instant once a delay is identified.

I have made mistakes with Gabe.  Major mistakes that cost $150,000 and two major surgeries to fix.  Gabe was a toe-walker.  We listened to all the experts and taught him to "walk correctly".  When we forced him off his toes it sent all of his bones out of alignment.  Turns out his toe-walking had next to nothing to do with his autism and sensory issues and everything to do with his Achilles Tendon being too short.  Lengthening the tendon would have been relatively minor compared to the bone grafts and pins needed to give him an arch again.

All that pain, all that time lost from his 7th grade school year, two years of football missed because no one had made the connection between the toe-walking and tendon length.  It took three doctors before we found someone who recognized the issues and referred us to the most wonderful foot surgeon, Dr. Leonard Janis.  I am also extremely grateful we found him before he retired!

Lesson learned: Do not assume that something is a product of the disability.  Check for other possibly serious causes.

Toe-Walking: Check the Achilles Tendon length! Striving for Independence: Ways to Help Children with Disabilities Learn to Function More Indepedently eBook: Kristan Payne: Kindle Store

Wednesday, January 9, 2013

The Right Place to Start: Fayette Progress School

Anglican Rosary (Protestant Prayer Beads)
We were blessed to be in the right place at the right time in 2001 when Gabriel was referred for Early Intervention.  We moved to Washington Court House, Ohio in the autumn of 2000.  In late December Gabe was having some "intestinal issues" so I had to find a doctor for him.  I found Dr. Greg Schaull.  During that first visit when I was only concerned about Gabe's diarrhea, Dr. Schaull zeroed in one the fact that at almost 30 months old, Gabe was still non-verbal.  He was on the phone to Sharon Gibbs and Help Me Grow before we left the office.  My head started spinning.

Sharon Gibbs helped us through the assessment and placement process. I will never forget the first home visit.  I can still remember where each of us sat even though I can't picture the furniture we were using.  The whole process seemed like a bad dream or cruel joke.  I was angry with them.  I resisted thinking of Gabe as anything other than quirky.  I mourned the lose of our innocence.

The first six months of Early Intervention were difficult...for me.  I enrolled Gabriel's older brother, Nathaniel, in the preschool portion of Fayette Progressive School as a "typical student".  Nathaniel was placed in Mrs. Liz Chaney's class.  Since Gabe would not allow me to be in his classroom (it was school after all), I spent time with Mrs. Chaney and Nate before each day started.  Much of my attitude towards Gabe's disabilities were  formed by watching her deal with her students and by seeing children with much greater problems than Gabe.

Each morning the students gathered around the table as they arrived and had milk.  I will never forget watching as some students opened their milk and straws without a problem and others struggled while the aide and teacher watched.  I soon realized that there was a purpose to this and not just to frustrate the students.  It was designed to challenge the students.  If the child could do it all, he was expected to do it.  If he could only get the straw out of the paper, he did that and attempted the next step.  After attempting it, the side stepped in and helped him finish the task.  

That was the first important lesson.  Always have the child do what he can and push him to attempt the next step.  Do not set him up for failure but also do not hold them back by doing too much for him.  Small steps can lead to independence.

The next lesson I learned as the year progressed.  Mrs. Chaney and the rest of FPS frequently took the children on field trips.  They went to Petland (which Nate was disappointed to learn was not Disneyland version featuring pets).  They went to restaurants, the airport, and ....everywhere they could.  I asked Mrs. Chaney about this once.  She said that these children need as much exposure to the outside world as they can get.  If we want them to function in society, they need to be in society.  They need to practice, practice, practice how to behave in each environment.

These two lessons have shaped how we deal with Gabe and his disabilities.  I believe these lessons have helped Gabe become the independent socially appropriate high school athlete that he is.  Long ago I told Dr. Schaull, who was also a neighbor, that I had been mad at him but long since realized he did the right thing.  I am very grateful to him, Sharon Gibbs, Susie Janasov, Mrs. Chaney and all the people at Fayette Progressive School for starting us on the right track. Striving for Independence: Ways to Help Children with Disabilities Learn to Function More Indepedently eBook: Kristan Payne: Kindle Store

Tuesday, January 8, 2013

Why Blog? Autism and My Son!

Yellow Gemstone Anglican Rosary (Protestant Prayer Beads)
The whole concept of blogging is still very new to me.  Let me get this straight...I write something on my little computer in my little corner of Ohio, publish it on a blog, and people all over the world might possibly read it. one will read it.  I hope people do read it.  Because of my son, I have a mission and a purpose in life.

So...what is my mission?  I need to share all I have learned in the crazy journey that began in the winter of 2001 when my two year old son was referred to Early Intervention.  It actually began when Gabriel was born but I didn't realize then that his differences meant anything other than he was not his older brother.  Each child is unique.  When do those differences indicate a disability?

A quick snapshot of Gabe during early intervention and preschool:

  • Gabe was non-verbal.
  • Highly sensitive to touch and sound
  • Easily overstimulated
  • Did not respond to cartoons or most toys.
  • Did not eat much.
  • Had trouble eating.
  • Could not hold a pencil and make a mark.
  • According to his teachers, he did not know his colors, letters or numbers could not find his own coat and would not let them know when he needed to go to the bathroom.
  • Could not tell me why he came home from school with a bloody lip. (Fell off his chair)
  • And he fell off his chair a lot.
Fast Forward to 9th grade (14 years old):
  • Fully integrated in the local high school and following the regular curriculum.
  • Can communicate effectively and appropriately.
  • Independently gets up and ready for school.
  • Does his homework as soon as he gets home and brings it to me to check.
  • Plays Football 
  • AND....WRESTLES.  Yes, my son with sensory issues who does not like to be touched wrestles.
The road from preschool to high school was very difficult,  It still can be.  But Gabe is well on his way of becoming an independent fully functioning member of society.  We didn't do it alone and we didn't spend any money on private therapies like ABA.  We didn't have any money and I disagree with some of the principles.