How I immediately dismissed the MMR/Autism Link

I was visiting my Grandmother and she was reading over the paper as she did every morning. She shouted to me from the other room, “Did you hear this? It says there might be a link between autism and the MMR.”

“Sounds like a bunch of sad angry parents looking for someone to blame.”

I didn't read the article. I didn't even ask her for any details. I completely dismissed it. It was an incredulous idea....a childhood vaccination having anything to do with autism. Why would doctors expose infants and children to such a thing? It couldn't possibly be true.

I went on for years never hearing about it again.

During that time, I was focused on teaching my son. I was involved in his school and talked daily with his teachers, aides and therapists. I continued behavior plans and followed through with expectations at home.

I was focused and never strayed.

I was never in an autism support group; never even heard of one.

I never searched the internet about autism or tried to find other moms online. It  was relatively new and I didn't have time.

I had two little kids who were constantly sick even though they never went to daycare. I was overcome with worry and took them to doctors, who never seemed too concerned and never really helped.

When Tristen was about 9 years old, I received a book for my birthday from my mother-in-law. It talked about kids like him who were chronically ill. The kids described in the book had the same issues my kids did. This was the first time I had some kind of direction how to get my kids healthy.

I took him to a new doctor who tested his blood. He told me how sick he was and that most of the vaccines he had been given had not provided him with immunity. I was shocked that I had done what I was told by our previous doctors, and put him through so much trauma, just to have them not work. This is where I started to question what had been taught to me my whole life.

 

I started to look back through their baby books and journals.  I started to see where they had been affected by their vaccinations.  My youngest son, Tanner, even had a severe reaction to the DTP where the doctor who finally stabilized him told me he should never have that vaccine again.  The next doctor we saw disagreed and mocked me for my concerns. There were all these red flags never set right with me, but I didn't know what to do about it.  Everything started to come together.

I wanted to continue to learn more about how to heal my son's health issues so I decided to go to my first ever autism conference and meet people who were just like me.

Jenny McCarthy was a keynote speaker that year, and it was the first time I had heard about her since she was on MTV's Singled Out.

I took what I learned about autism and vaccines from lecturing doctors I met in person. And lots and LOTS of books.

I never believed the headline my Grandmother read to me 15 years ago, because it was easier to dismiss. Juggling a 2 year old with autism and a newborn baby while my husband was deployed left no time or energy to go down a rabbit hole of questioning everything I had ever been taught.

Last year I learned about the CDC covering up a link between the MMR vaccine and autism. They knew if the children received that vaccination on time (at 12 moths per the CDC recommendation) there was a dramatic increase in chance of autism. They found it in their own study, and they covered it up.

I'm not saying the MMR caused my son's autism, but it has definitely caused some kid's autism.

It is easy to dismiss something when it seems it can't possibly be true....when deep down you don't want it to be true because it upsets the foundation of what your life has been based on....being responsible and following the rules.

I didn't join in some Jenny McCarthy groupie fan club to gain this opinion.

I didn't have any influence from any autism groups or any other autism mom's.

My thoughts are based on my life experiences with my kids and what makes sense to me from reading package inserts and published medical journal articles.

Don't believe me just because I said so.

Check it out for yourself.

Find out the real facts for yourself.

You don't want a snap judgment to leave you with regrets.

"I may not be a smart man, but I know what love is."

I've watched Forrest Gump enough times to have the movie just about memorized.  I watched it before I had a child with autism, and cried at the end and knew it was undoubtedly a uniquely touching movie.  I watched it post-autism diagnosis with fresh eyes and an grew an even deeper love for the characters.  I loved how Forrest's momma knew how to explain things to him so he could understand.  I loved how Forrest tried so hard.  I loved how Jenny was his childhood friend who stood up for him.  As Tristen grew up, his dad and I often joked that Tristen would be content to mow football fields on a riding lawn mower when he grew up.  This was a fond thought for us, because of what the movie said to us when we watched it.  We marveled at his accomplishments.  Forrest Gump led an inspiring and full life.  Even though it is fiction, it gave us hope for great things for our son with autism because even with his disability, Forrest was a success.

One endearing thing about Tom Hanks' character, is that for the most part, Forrest doesn't really realize he has a disability.  He doesn't seem to fully understand the impact when kid's call him stupid; he just replies with a quick phrase his mother taught him,"Stupid is as stupid does."  It doesn't seem to hurt his feelings really, or sink in, he just continues to go about his business.

Tristen is about to turn 17, and luckily, I have not had to witness anyone saying something so cruel.  When he has become frustrated from time to time over the years because he couldn't remember something, or a task was too hard, we would simply explain to him that it was OK, some people take longer to learn than others.  We assured him he would get it with practice and patience.  We never told him he was "autistic".  We never labeled him in that way because we felt that he would take the term in a negative way and some how feel like he was "less". 

I don't ever want him to feel limited; I feel there are so many ways for him to excel in life.  I home school both my boys so I can give them a well rounded education that would go outside the norm of most public schools.  We discuss values, morals and the future.  I told the boys how infinitely important it is to me that they lead a good life, which meant being kind, generous, trustworthy and thoughtful.  I often express the important of making good life choices so that they can be happy adults.  After the short discussion, Tristen was about to leave the room, and stopped in the door way.  He glanced back at me with a solemn look and heavy eyes. 

"Mom, how long do I have to wait to have a "good life"."  (he did the air quotes appropriately)  His demeanor had changed so drastically...he was so visibly concerned...I called him over to sit by me on the bed and rubbed his back.  He stiffened up with his arms folded across his chest. 

"Tell me what you mean, honey."

He looked down at the ground...let out a long breath and said, "I mean....when am I going to be smart."

The scene played in my head: "I may not be a smart man, but I know what love is."

It was the same look that Forrest had.  It was the same despair Forrest felt.  It was the same understanding of the difference between him and others.

As my heart breaks, my eyes start to fill and my chin quivers.  I search for the words he needs to hear.

"Everyday, Tristen.  Everyday you are getting smarter and learning more and growing up.  You don't have to wait...it's happening every minute of everyday."


 

 

Can't imagine leaving your kids? Help this mom kick cancer!

Mortality.

We may not remember at what exact point in our lives we realized it, but I bet you have all thought about it.

Death.

What will happen when I die? Where will I go? Will I cease to exist?

Many have religious beliefs that help with these questions, but whether you do or not doesn't really matter, because despite the answers, we still have these questions:

Will it hurt? When will it happen? Will it catch me off guard?

These questions can be more plaguing, and most will try to live their lives cautiously to avoid an untimely death. But it's mostly out of our control. Most of us don't get to decide the logistics.

I remember the moment when I really began to fear death.

It was shortly after my first child was born.

Like being slapped in the face, I was hit with the thought of what would happen to my child if I were not around to take care of him. Panic instantly set in as I went over lists of names in my head of family and friends who could possibly take on this responsibility.

More questions.

Are they already good parents?

Do they have the ability to care for a child?

Do they have the monetary means?

Would they be willing to take on the responsibility?

If you've had this experience, I'd many of you have easy answers to those questions. You know good, kind-heart-ed, competent, willing family members who would be fighting over the opportunity to step up in such a tragic circumstance.

Some don't have such easy answers.

Maybe you don't have much family. Maybe the family is willing but ill equipped. Maybe the ones closest to you have struggles of their own. Maybe they would want to, but couldn't.

No matter what the answer...easy or hard, it is something that really eats away at us as parents. Just the thought of leaving our children like that in this world is enough to shed tears, but to find a suitable substitute in some cases may be near impossible.

Will they love the child as you do? Will they have patience? Will they teach them all the tools they need to live a successful life? Will they be kind?

What if your child has a disability?

What if every ounce of effort it takes to raise that child on a daily basis is that times 10 of a typical child? What if your patience level needs to be a thousand times? Who is going to have that quality needed for your child?

When you see how the world looks and interacts or ignores your child, so you have to be the advocate every waking moment...who is going to fill your shoes?

This goes beyond being just a “parent”, although I believe parenting is the most important job a person in this world could have. This is a super-parent: an up-all-night-calm-all-day kind of super being!

Will the person have what it takes to continue to love this child when no one else does?

All we have to do is look at the news to see how autistic individuals are treated.

Abused and neglected in schools.

Teased and beaten by peers.

Humiliated for the world to see.

Forgotten and left alone.

This is the fate of many individuals who HAVE doting caregivers and loving homes.

Where will my child be if no one steps up to the challenge?

Institutionalized?

Then there is the money. Who has the disposable income for life-long care?

And if you are biomed or homeopathic? Forget about it! Who is going to pay out of pocket when you can get prescriptions practically for free?

Will the person caring for my child care about their special diet? Will they understand how important a gluten free casein free diet is? Will they jump through hoops to have similar alternatives at all extracurricular functions? Will they cave to the peer pressure because they don't really understand why they can't eat those foods? Will they buckle after seeing the grocery bill for one week and switch to Ramen and Fruit Loops?

And what can we do about it? We will be helpless from wherever it is you believe we go after life on earth is done.

Will that person understand their needs?

Maybe if my child had super-human quality or trait to impress them. An impressive singer or dancer or pianist. Or an impeccable memory. Impressive artistic abilities. The world loves those kids.

But what about the biters, pinchers, scratchers and screamers? What if they can't tell you what they want...what is hurting...what they need?

Will they clean up the poop smears on the walls day after day and still cuddle them at night when they want to be loved?

Will they change their diapers when they are adults?

Will they cry out helplessly with every seizure and pray for it to end?

Children and adults with disabilities need a kind of self less love that is unfortunately diminishing in the world as we know it.

It is heart-breaking and horrific to think of any child losing a parent and not finding a loving home to thrive in.

It is down right all consuming and terrifying to leave an autistic child in this world without the ones who understand them and depend on them the most.

When we are doing all this worrying, we are visualizing the 'what-if's'.

Well, 'what-if' you were an autism mom, diagnosed with cancer.

Please, if you can, give anything at all to help this mother diagnosed with cancer have more time with her son.

If you would like to donate to our fundraising campaign to support Mel and her family please DONATE HERE: http://t.co/LeZ12VJ2Q4



And to read more about her and her story, check out http://thinkingmomsrevolution.com/help-autism-mom-fight-breast-cancer/

Ok, now...don't get excited

"OK, now...don't get excited."
He said it in such a grown-up way...not in a sing-songy way...or like what I would have expected: reciting a line from a TV show.

I burst into a fit of giggles...and trying to stifle them I exited the kitchen and hunched over in the dining room area out of view.  "Don't get excited?" I laughed. "Don't get excited?"

The day before he had blown me away with a similar comment, so I did my best not to do what I do best...give a great amount of praise for a seemingly small effort or task.

You see, I've been conditioned to be this way since I learned of his autism diagnosis when he was 2.  Celebrate every small step towards recovery, because that's what keeps us going, isn't it?  I mean, when your child can't talk or even point to what he wants....when he screams bloody murder when you don't follow the same path in the grocery store every time you go...when he vomits EVERY time you go ANYWHERE in the car.....when he can't sleep through the night....and ESPECIALLY when you see he is nowhere near the level of his peers in school.....you celebrate the small stuff.  Cuz, let's be honest, the small stuff IS big stuff for us!  Because it took so long to get to that point that so many others take for granted. We can't afford to take anything for granted.  We have to see the good...the positives...just to make it through.

Now that my son is 16, there are very few I can share his progress with.  No matter how much we hate to think about it, the gap between our kids and their peers turns into the Grand Canyon by this point.  Is he getting his driver's license?  Going to prom?  Nope.  But he is emerging as a teenager...and I couldn't be more thrilled!

How many parents do you know that get secretly excited over back-talk?  Over their child copping an attitude?  What about when they have to ground them?  Do they put that in the "baby-book"? 

Ha!  Well, that's me, and I tell you what, I'm proud to say it!  Because that means we overcoming autism!

So, what was I not supposed to get excited over?

He remembered to take his CD dose on his own with no alarm or reminders.

I had made this "mistake" (as it was brought to my attention) yesterday when I saw he had taken a dose on his own:

"Tristen!  You remembered! (gave him a squeeze) Good for you!!!" (insert the extreme enthusiasm only an autism mom can muster)

"Uh, mom....I think you are over-reacting." (said in a very teenager-ish way...you know, monotone with that bit of embarrassment mixed with disgust)

I could have died laughing...glad I didn't.

So, when the moment came again today, I started to gasp....and before realizing what I was doing, he called me on it.....

"Now, don't get excited."

Excited!  Excited??  My whole adult life I have been getting excited over your accomplishments, son!  How do I not?  How do I switch from being that mom to a regular mom?  I don't know if I can do it.  Do I want to do it?  Do I want to become complacent by the mundane things of life and not recognize how superbly awesome you are???  Nope.

I guess I'll have to learn how to be excited on the inside.

Dose on :)

The Deeper Meaning of Consistency

 

con·sist·en·cy

1.   a degree of density, firmness, viscosity, etc.: The liquid has the consistency of cream.

 

2.   steadfast adherence to the same principles, course, form, etc.: There is consistency in his pattern of behavior.

 

 

3.   agreement, harmony, or compatibility, especially correspondence or uniformity among the parts of a complex thing: consistency of colors throughout the house.

 

4. the condition of cohering or holding together and retaining form; solidity or firmness.

 

When it comes to teaching a child or someone with special needs, the word consistency is used often by teachers, parents, care-givers and therapists.

I have used this word and practice often, as I am the oldest of 7 children and the mother of two boys with special needs.  Working in the special education department in the public school system has also given me experience with this word and when combined has provided much experience putting it into practice.

It wasn’t until recently, when a comment was made by someone charged with the care of special needs individuals, did I figure out what I believe to be the true meaning of the word “consistent”.

“Why should we even try to do anything with him when he is in our care?  If his mom doesn’t do what we do here when they are at home, nothing is going to work.”

I was unfamiliar with this sort of defeatist attitude.  I mean, don’t get me wrong, working in a public school the blame is almost ALWAYS on the parents.  Whenever a kid does anything, it is the parent’s fault.

“They are spoiled.”

“They aren’t made to mind.”

“Their mother does everything for them”

 “They just need a good swat on the butt!”

 

No matter how true these statements may be in some cases, it does not disqualify that individual from learning or having appropriate behavior outside of the home.

This is not to say that parenting doesn’t affect a child’s behavior because of course it does.  It is obvious in observation which children are held accountable for their actions and who aren’t;  and what parents are consistent with their expectations and consequences.

When there are inconsistencies, it makes the learning progress more difficult.  They are not used to the expectations set before them.  But it is not impossible.

To have a well-behaved individual, it would be best for that individual to be surrounded by people who are “on the same page”…meaning all adults and caregivers interacting with the child have the same  rules, guidelines, expectations and consequences.  If they do, the child is more successful at having appropriate behavior.

But from my experience, if the child IS in situations where they are  “raised” differently, that does not mean they do not or cannot adapt to a behavior plan.

Each child develops a relationship with the adult caregiver in different aspects of their life.  ESPECIALLY those with special needs….they really see to the core of an individual and thrive on routine and consistency above all else.

For example: 

My children:

I started working with an autistic child when he was 6 years old.  Although non-verbal, he was potty trained after only a few weeks and for the next five years never had an accident at school when I was there or when I took him on numerous field trips.  But, when he was with his family, he had frequent accidents and mom put him in a diaper, and without exception on family outings.

If we used the theory that no matter what we try to teach when we have a child with us won’t work because it’s not being done at home, this example above would not be possible.  Not only would it make the above example impossible, but it would also negate any kind of school or therapy program where the individual was not in continual care by one adult 24/7..

Will the child have a more difficult time adjusting to the request  from his caregivers if he is used to being able to present certain behaviors?  Most likely, but that does not mean it is impossible.

This student also sat in a high chair at home and frequently threw his food and made big messes.  He also climbed cupboards and got into cabinets.  At school, he sat independently, ate what he was given, and did not throw things.  The home behaviors were not seen at school.

 

 

Another example:

A 10 year old girl I knew was as sweet as pie at school. Teachers loved her. She was a good, responsible student.  When she visited her mom, which was very infrequent, she would whine and fuss like a much younger child and demand she get her way.  When she was with her dad, who she lived with, she was more of a tom-boy and prone to getting into verbal and physical fights.  I observed her in all three situations and it was hard to believe it was the same child!

I think this also proves that an individual responds to the relationship built by the parent or caregiver verses the level of consistency.  Her best behavior was at school, where she probably had the most consistency and the most praise for positive actions.

Example:

A mother came to me whose four year old was terrorizing their home.  He was destroying everything in his path; and the large two story house looked as if literally the Tasmanian devil had taken up residence.  He was always naked, screaming and climbing all over the place.  There was food ground into the floor in every room and the bathroom was constantly flooded. Dump trucks were filled with urine and random poop piles could be found amongst the chaos. The mom could no longer cope after he had suffocated and drowned family pets, so she spent her days in the bedroom with the door locked.

I took him to my home for the summer months for about 10-12 hours each day.  He wore clothes, ate at the table, was calm and respectful to objects, people and animals and became potty –trained. 

When he went home, he was once again given free rein to do as he pleased.  His mother did not use the schedule or the directives we set in place in my home and the child returned to the same behaviors while in her care.

Although he was not in my home as often, he continued to listen and be respectful while in my care.  He learned that our specific relationship meant that there were certain expectations, rewards and consequences because of the clear consistency in his schedule.

Just because not every care-giver in a child’s life is not “on the same page” does not mean there is no hope or no sense of trying.  We can help these individuals by giving them a chance to reach their full-potential using our own personal consistency in our daily interactions.

This is more about us deciding to clear goals and objectives while establishing a meaningful relationship with the individual.

I have read countless behavior reports on individuals new to my care.  Almost all of them do not exhibit the extreme behavior in the new setting that they did in the previous.

Consistency is within US.  This is OUR job.  We need to follow through with what we say.  We need to keep the same expectations daily.  There is no “today I just can’t take this so I’ll give in”.  This is SO detrimental ESPECIALLY for autistic kids.  Once they’ve seen your weakness, they will be sure to push it to that limit and beyond EVERY time.  They need to know you are sincere.  They need to know you mean what you say.  If you make a rule, think it through.  Am I going to want to fight for  compliance for this EVERY day?  Is it necessary and worth it?  If it is, do not falter.  This is really about US and not blaming THEM.  We need to do everything we can to make the time spent together enjoyable so the individual wants to comply with our directives. 

To Tristen on his 16th Birthday:

To my son on his 16th birthday:



I could be worried today about you getting your driver's license.  Instead, I'm worried about your speech.  No....not for a high school public speaking class, but focused literally on dissecting how you form your words and sentences and what I can do to help you to improve how you talk.

I could be worried about your choices in friends and how they might influence you in your newly found freedom of being a 16 year old driver; Instead, I am worried about you having any friends at all.

I could be taking you out driving and teaching you about road safety, but I am more concerned you don't understand "stranger danger"...whether you understand that not everyone is honest and trustworthy.  You have such a pure heart, it is hard for you to understand that most people in the world are not that way.

Today, I could be panicking about your current girlfriend.  Is she right for you?  Is she a good influence?  Are you making good choices when you are alone together? 

I could be praying each day that you won't come to me and tell me she's pregnant. 

But I'm not.  Instead, I wonder if you will ever get married and settle down one day. 

I'm wondering who will look out for you after I'm gone.  Your brother has already assumed to take on the responsibility, so now my prayers are focused on him as well.  I pray he will make it through his teenage years to be a responsible adult.  We are all counting on him.  He doensn't have the luxury of screwing up.

I choose to look at today optimistically, though.  I've come to the realization that I should be grateful for all the amazing qualities that make you who you are.

You know the differnce between right and wrong and always choose the high road.  You are kind to animals and help other people when they need it.  You have never done or said an unkind thing to anyone. 

Maybe there is no prom in your future.  Maybe no driver's license.  Maybe no wedding. 

Today....that's ok.

Because today, we celebrate you.  I'm choosing not to be angry today because of the
"hows" and "whys". 

I choose to be happy.

Your face is lit up with excitement and you rush to ask me if it's time to open presents.  You are bouncing up and down with glee at the thought.  You still love life.  How many parent's of 16 year old's can say that?

You are thrilled to get your favorite toys and games...not too cool for family parties or shrugging a brief "thank-you" for a wad of cash and then back to hibernate in your room.

You still like character birthday cakes and blowing out candles. 

We can still be close and enjoy time spent together.

That is not to say we haven't had our struggles over the years!

One of your birthday parties I have on video.  It was a very small party...Just our little family and one friend your age and his mom.  When we started to sing "Happy Birthday" to you...you started yelling at us!  You were angry that we were singing (which didn't deter us by the way). You jumped around with angry eyebrows charging at  me and screeching at us as if to say  "No", "Stop", "I don't like that", except you couldn't say the words and it all came out jumbled.

On your sixteenth birthday, you sang happily with us...knowing all the words and changing the "you"s to "me"s. Your face was lit up with excitement as you sang your heart out!

I remember the tantrums at birthday parties that weren't yours...when you didn't understand why you couldn't eat the cake as soon as you saw it;  when you thought all the presents should be for you.  Despite the difficulties, we treated each instance as a learning experience...reinforcing the rules and teaching you how to behave.  It was a struggle.  I'm out of breath just thinking about how you would fight me when I tried to hold you and redirect you.  I'm sure I looked ridiculous and made everyone around me uncomfortable.

So, instead of choosing defeat today, I am choosing to look at our successes.  I choose to see your strengths and be grateful that I am fighting battles just like any other parent does with a teenager.  Our battles just look a little different.

Yeah, optimism looks good today.

Happy Birthday!



 



The Right Time

"So, I've been meaning to ask you about the sign you have on your car....uh...the bumper sticker?  It says kids with Autism can recover?  I've never heard that before...can you explain a little more?"

 

I was pretty shocked by this question.  I had that magnet on my truck for about a year and no one had ever asked me about it.  It wasn't just the question that took me off guard, but it was the genuine interest that set me back.  I was used to the eye rolling and the defensive objections, but not someone who really wanted to understand the statement.

 

Ok, Meadow, don't choke on your food!  Don't act surprised.  This is the moment you've been waiting for.  You "train" everyday for this!  You know what eloquent people sound like...you read their blogs and posts on Facebook!  Be smart.  Be confident.  Don't make things too controversial or too technical.  Just explain...but don't take an hour to do so.  Breathe and let the conversation flow.

 

So, I did.  I told her about children with autism having comorbid conditions that most doctors refused to recognize or treat. She was appalled to think a doctor would not see the child first.

 

I told her it was a book I read, not the internet or some sort of cult, that led me to a doctor who would treat Tristen for his underlying illnesses.  I told her it was extremely expensive, and I started working outside the home to cover the costs; and that I could only do so because the treatment was working- I did not have a sick child home from school regularly to take care of.

 

I told her how the doctor used lab tests to find a strep infection in his gut that was most likely the main cause of his life long fevers and rashes.  I explained how when a person with autism was treated for their illnesses, the severity of their autism would start to fade....sometimes more dramatically..... and that over time, in some cases, the child no longer fits the criteria for autism.

 

The young mother took it all in. She never shared if she knew anyone with autism or her feelings about what I had just told her.  She seemed to be mulling it over in her head.

 

I said, "Every person is an individual and what works for some doesn't work for others.  For us, I followed my gut....I followed the promptings of the Holy Ghost to go after this method of treatment for my son...I had no doubt that I was doing the right thing!  It all made so much sense and had all the answers I had been looking for!  There may be somethings I can't change....like the damage done for having high fevers for nine years....but that's ok with me too, because there IS a lot I CAN change!

 

 I believe it is my job as a mother, to do whatever I possibly can for my child to be his best.  I will spend my last dollar and lose my last friend for my child. I will feel completely alone in this world.  But it will all be worth it."

 

She didn't ask me about vaccines...and with a baby in tow....I imagine she didn't want to know the answer.  That was o.k. too...I think sometimes if we hit 'em to hard with something that controversial, they tend to put up that wall....that scared place where they don't want to listen to anything that shatters their idea of a perfect world where no one is evil or greedy.  This way, if she believes the part about treatment, she will be more open to believing the rest when the time is right :)