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Advocating in America for Autism: How We Met President Obama!

Sam President ObamaBy Lin Wessels

You know, I get discouraged sometimes with my government, with my president, with my countrymen and women, with my country as whole.  I suppose it is a natural thing.  We all want a better life, especially when it comes to our children.  Add to that, waiting is hard, so hard!  We have been waiting for proper recognition as well as answers from our collective country about the current autism crisis for what seems like forever!  Then take into consideration watching your child with autism grow up before your eyes while still waiting for improvements and unity across the land in services, acceptance, tolerance, acknowledgment, improvements to gainful employment, mentoring, insurance reform, education, protection, better services and resources for adults on the spectrum, and on and on and on.  It becomes nearly all one can bear to continue to wait.  So, we cope.  In our family, one of the biggest ways we cope is we get busy.  We take action!  And we advocate.  We advocate anywhere and everywhere we can!

Our family has been fighting the good fights (there are many) as well as the not so good fights (there are many of those as well) on behalf of those with autism and their families for nearly a decade now.  For the vast majority of those years, we have been pounding the pavement meeting as many of our influential elected officials or soon to possibly be elected officials as time and circumstances would allow for us to.  It is something we CAN do.  So we do.  

Our son with autism, who is now ten, has always played an active role in our mission.  So much so, he takes ownership in what we do.  He has been raised to appreciate our very unique political process here in the United States of America.  He has seen firsthand how our processes works.  He understands how those processes are meant to work FOR him, for ALL people within our great nation; no matter your race, creed, religion, nor your differentiated ability.  It has been a process......oh, the stories I could tell you.  It has not always been an easy process, but it has been a valued and worthwhile process in our family and home, one we don't take for granted. 

We have met and questioned very nearly every candidate who has campaigned in our home state of Sam and RomneyIowa, candidates from the current year's presidential as well as the last.  (See photos at the end of this post.) Our list is long and impressive, however that is not why do what we do.  We do it because we CAN.  We do it because we understand our inalienable basic human rights in this great land of ours; we also understand that with those rights comes responsibility.  We take those rights along with the responsibilities very seriously.  Above all else, we do it because we love our son.  WE love him beyond measure. We do it to help him not only learn that he is every bit as valued as the next person, but to BELIEVE it as well.

And he does.  As he should.

Although our life's mission is very definitely an extremely politically charged one, it can by no means have boundaries or lines which are not easily crossed by any and all.  Autism cannot afford partisanship.  We need every party and every one working together and working hard!  That is a plain and simple fact.  

Most recently, September 1, 2012, to be exact, we were successful in meeting our president.  Yes, our president.  President Barack Obama.  The very magnitude of that still brings tears to my eyes.  I honestly don't think I can describe not only what that meant to us, but how that felt.  I was as giddy as a teenage girl on a first date with the anticipation of the mere POSSIBILITY that we would be successful in meeting our country's leader, let alone speak with him.  It was such a long shot.  

So how does one go about meeting the president of the United States of America?  I don't know.  I only know how we were able to accomplish it.  We used every resource and contact available to us that we had the great fortitude and good fortune to make along the way in this amazing journey of ours.  For example, a former DHS case worker, who is now a national delegate for the Democratic Party, was able to secure tickets for us.  She was very familiar with our political adventures and autism advocacy.  She had been Sam's DHS case worker during the 2008 election.  

I was then successful in turning those general admission tickets into VIP tickets, with a well placed, timely phone call to the Obama for America headquarters in Sioux City, IA where the event was scheduled to be held.  As it turned out, the man responsible for the the event becoming a reality, has a nephew with severe autism.  He loved hearing about our mission.  He was grateful that others were willing to even make an attempt at reaching the president on behalf of individuals with autism.  Both of these individuals were more than happy to take part in helping us in our mission.  And yet, it was still a long shot and we all knew it.   

The rest was purely fate.  How else could have my son Sam and I ended up standing in the very first row, about eight feet away and squarely in front of where the president was about to speak to a crowd of  somewhere between three or four thousand people?  Not to mention, this all took place in less than three days time.

Sam Still WaitingSo then what?  Well, you stand and wait for a very long time in the hot sun, with not a cloud in the sky.  The temp soared at over 90 degrees.  It was an outdoor event.  If you are Sam, your mom finds you a little shade by way of a nearby tree here and there where she can still keep an eye on you while allowing you some relief from the heat and a place to sit.  She also allows you to bring your iPad and two very small, not sharp, nor intimidating, nor intrusive toys to occupy some of your very long wait time. 

Long and grueling?  No, although it could have been.  The entire experience was by far too exciting, compelling, insightful and fascinating to be anything other than phenomenal!  The people we met, the conversations we engaged in, the kindness of strangers, the swelling crowd, the speeches we heard (and we lean right, yet I was able to find substance, unity and even common ground), the motorcade, secret service, the anticipation, and then the presence of our commander and chief. I can't describe the enormity of it all!  I can say that I walked away feeling especially blessed having had the experience at all!

After reciting the pledge of allegiance to our flag, a prayer from a minister, the national anthem, the mayor, several speeches by locals, rules and instructions as placed forth by the president's secret service detail, introductions and of course the man of the hour, our president; after all of that, he made his way past the media, toward us rounding his way along the railing that separated us from him.  I repeatedly prepared Sam, "Get ready.  Here he comes.  Know what you want to say to him.  Be ready."

Sam President Obama ListensAs he neared us, I was practically dumbfounded that here we were, about to meet our president.  Once he reached us, I instructed Sam, "Tell the president what you have to say."  Sam began to speak.  There were a lot of people.  It was busy.  It was loud.  The president leaned closer, completely engaged in what Sam had to say to him.  To say I was impressed in his sincerity in hearing Sam's message would not serve the moment due justice.  I was in absolute awe at the amount of time he spent with this one child.  Sam told his president his name and age.  He made sure President Obama knew he was honored to meet him.  He then asked President Obama if he would please join him in standing up for people with autism.  He further explained that he himself stands up for people with autism because he has autism, and although he is able to speak for himself, too many people with autism are not and someone needs to stand up for them as well.  The presidents reply?  "Sam, I will gladly stand up with you for people with autism.  As a matter of fact, I had already planned to stand up for those who have autism.  Autism is an enormous issue and I have a plan."  He thanked Sam for his courage in standing up for something he cares about as well as for taking the time to come and see him in person to deliver his message face to face.  

Are you crying yet?  I still do every time I think about it.  

I quickly extended my hand.  As President Obama embrace it, I looked him squarely in the eye and simply said, "Thank you."  He nodded in affirmation replying, "Thank you and God bless you."  

And thus ends a day with the president of the United States of America, the experience of a lifetime!  A memory I shall forever hold near and dear to my heart.  I am so grateful to so many people who had a hand in clearing a pathway that we might be so blessed as to carry a message to our president on behalf of those who have autism as well as those who love and care for them.  I don't know as though I can properly convey our gratitude and our gratefulness to each of you as you too have a hand in this.  You and your loved ones with with autism keep us going even though you may not know it.  You drive us to do our very best in reaching out to others, in reaching as many as possible.  You give us the strength to carry on even in our darkest hour.  Thank you seems hardly enough.  Yet it is all I have to offer.  So, from the very bottom of our hearts, THANK YOU!   

I've learned a thing or two on our journey to affect change.  I've learned to always remember who is in my address book and why.  I've learned to not be shy and ask them for help when they might be able to do just that.  More times than not, they are ready, willing and able!  I've learned to not always take things at face value and to ask a lot of questions.  I've learned to be politely forceful when necessary, not take no for answer, to find another way when necessary, to ALWAYS remain calm, cordial and respectful.  Above all else and by all means, don't burn any bridges!  

I've learned to talk with Sam and try my best to prepare him every step of the way.  I've learned how to keep him most comfortable in most any situation.  I have learned that he can do most anything his heart desires despite the challenges his autism presents him with.  I have learned that our endeavors are awakening in him character, compassion, integrity and substance. 

Sam has progressed, grown and learned much, much more than we could have ever imagined for him in this amazing adventure as well.  He has learned that he can be a voice for himself and others.  He has learned that he has the RIGHT to stand up for himself and others.  He has learned that hard work, tenacity and due diligence pays.  He has learned that politics matter.  He has learned to speak out, speak up, say what he thinks and feels and make it count!  He has learned to stand up and be counted!!  He has also learned that in America, you can dream to one day meet your president because that dream very well may come true.  

Perhaps most pertinently, WE have learned that despite some dark, discouraging days, we by far still live in the greatest nation on the face of our Earth, OUR United States of America.

Sam Ron Paul

Ron Paul holding Sam's shirt.

Sam Newt and Calista

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Sam, Newt and Calista Gingrich

Sam and Herman Cain

Sam and Herman Cain

Sam and Bachmann

Sam and Michelle Bachman

Sam and Santorum with Alison Dreke

Sam with Rick Santorum and Alison Dreke

Sam and Pawlenty

Sam with Tim Pawlenty

Romney campaign trail photo shot by Brian Snyder for REUTERS

Sam with Romney (Photo by Brian Snyder for Reuters)

Lin Wessels, her husband Mark and son Sam are just average everyday Americans whose lives were forever changed by autism.  They now campaign to affect change on behalf of all families affected by autism, because it could too easily happen to you too.

 

Comments

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No current presidential candidate truly understands the issues affecting families who live with severely autistic individuals. The reality is these candidates don't have any real experience in dealing with the day to day operations of living with autism. These men don't get it. I"d vote for Hillary Clinton for president because atleast as a woman, she'd have the compassion and insight needed into what a woman feels when they have a child with special needs.

Its great that Sam and Lin have had this opportunity and experience. I applaud them for all their hard work.

With that said, Politicians are just that Politicians. They tell us what ever we want to hear. Recently, I have been hearing President Obama and the democrats talking about Autism, and how the party has done so much for them. What have they really done for us. Nothing that the previous administration has done, accept ignore that there is a real problem.

My son who is turning 21 soon is Autistic. We were before the boom, before any real support or understanding. We caught it early, and did most everything that early intervention does today. I look at it as we were Pioneers and every dollar we had we spent, all credit we could find we spent. Government assistants was a pipe dream.

I believe that early detection and early intervention is crucial. I also know as a fact it can only help to a certain level. Eventually, regardless of how early you detect and start working with a child, a large majority of the autistic population will end up needing assistance when they are adults.

All of our politicians are letting us down. Look at the Epidemic that has occurred without acknowledgement.

We as a a people and as we elect our government, need to understand what is important and what is not.
To protect, help, and sustain the individuals that do not have a CHOICE of their condition/disability should be the top priority of our government when it comes to welfare of individuals.

Examine that statement carefully. What we really hear from our government is they are attending to the MEME people, that do have choices, choices of how they live their lives, how they conduct their lives, they make their own decisions (bad or good). Our Children really do not have any of these choices. And therefore should be the real priority of our people and government.

5 years from now, we are going to have another epidemic. What are we going to do. How are we going to support all these Adults with Autism. Our government is slow, they are and will be reactive to the situation. It will take years to figure out.

We need to start, thinking about all of these children growing into adults NOW, and stop thinking about MEME. We need to convince our elected officials that this is going to become a real problem, that we as the people of the U.S. feel obligated to address. We need to stop thinking about ourselves, Less taxes, More unemployment, more food stamps, Free Contraceptives etc. We need to focus on the problems that are the most important. Those that cannot fend for themselves, that have had no choice in their disability.

Thank you, Sam. Our son is 3 years old & just started on his journey with autism this last year. He is still non-verbal but has a smile that can light up the world. I pray everyday that there will be the right resources & people to help him placed in our path so that someday he will be in a position, as you are, to speak for others like him. The efforts of you & your family have touched my heart & I wish you many successes in your continued journey.

Sam,

Thank you both for speaking up on behalf of those with Autism, including yourself!
You and your mom have a beautiful message of hope for positive change to share!
Keep it going!! The world needs more folks like you in it:-)

Katy

Thankyou to Sam and his family for speaking out for our autism spectrum kids who don't have a voice for themselves. I can now include Sam in my list of role models for my ASD son. I explained to him that being autistic does not put him at a disadvantage to anyone else.

Even more so, he is able to teach our society about life from a different point of view. I hope that this brings to light the fact that as an "invisible" special need, others are able to show more compassion and support to ASD families.

Best of luck to you and your family, Sam.

May be we should be rather communicating with the First Ladies about issues of vaccines and autism? Certainly they are closer to child health issues that their husbands and have more time to commit to them. However, the greatest impact we may have acting on state levels, where the laws regarding state vaccinations are created and executed. If these laws are contrary to our children’s vital interests, we should boycott and fight them to protect our children from vaccine-induced injuries and deaths. This is our natural parental right and duty.

Thankyou Sam and Lin, Youre doing things that many of us just cannot do. I often think how amazing it is the way so many people of diverse backgrounds come together in autism. Someone knows how to write well; someone has a legal background; someone understands how the media works; someone has a useful science background- and on and on. Friends, I too am pessimistic and yet, if I think where we were 10 years ago and where we are today, I feel optimistic. God bless all of you.

Thank you, Lin and Sam for your strength in getting the message out to the candidates. If the President is re-elected, our mantra should be "Where is the Plan?" No matter who is President, we all need to work towards a National Autism Summit.

Great effort, Lin (and Sam). Without advocates, nothing happens. The squeaky wheel does get oiled!

I think our President, like just about any politician out there wants to help people with autism. Whatever party affiliation, I think it's in their DNA to try to help people...that's why they choose public service in the first place. That said, their methods, policies, and base of knowledge on issues can vary greatly (or not). Re medical research, in my view there is not much difference in policy between the previous administration of George W. Bush and Barack Obama's. Both supported and signed single disease legislation over opposition (CAA and CARA) that directs the NIH CDC etc to do their thing...with input from IACC. I think every corner of the autism community has some issue with the choices they've made, including me. Regarding treatment and lifespan healthcare issues, there is a big difference between the major party platforms and philosophies, especially concerning medicare and medicaid (which impacts tons of stuff, including ABA etc) So it pays to study the details before making your decision.

My own personal experience, which should be unsurprising by now given his well documented insistence on preparation, is that Obama has personally studied a wide range of issues surrounding autism in a highly disciplined way. This study goes back to his days as a State Senator in Illinois, when he first introduced autism related legislation. He is far ahead of any other politician (of any party) that I've come across over the years on autism stuff (and like Lin I'm met a ton of them). His disability team knows their stuff. I don't agree with some of the policy/choices they've come up with but don't fault the effort they've made on autism.

The Obama's personal understanding of the issues has certainly been informed by having friends/staffers/supporters impacted by autism, especially Mike Strautmanis and his family, who are as close as it gets to the first family. http://www.whitehouse.gov/blog/2011/09/30/father-celebrates-todays-reauthorization-combating-autism-act

The question is never "Who is running for president, but who is running the president."
Maurine

Wow, beautiful story, and thanks to your family for all your hard work for our kids. I have a son that is very severe and would never tolerate standing out there and waiting like that for a variety of reasons. So thank you Sam and your family for taking the message out there and speaking for the kids that can't speak for themselves!

There's no doubt Obama isn't autistic: indeed when you see Dubya or Romney he has at least above average social skills (for a President). But this is a vain pursuit - don't we recall that last time around he bluntly announced that he wasn't in favour of vaccine exemptions. He did try to make out he was the autism candidate, but then you have to be the candidate for everything if you are running for president. Also, to run for President you probably have to have a personality disorder.

The best thing you can ask any of these jerks is how they are going to pay for it all. They don't like paying for disability (unlike wars).

Years ago, during college, I worked at the Democratic campaign headquarters in Minneapolis. You might say I was a teeny, weeny bit idealistic. One day President Johnson granted Us one of his visits(and I don't mean Andrew Johnson). I remember it well because Minnehaha Falls had dried up that summer so the city poured thousands into pumping water from somewhere into the Falls so Pres. Johnson would be impressed. But I digress. More to the point was that worked for him and his boys---and then all he gave us was more Viet Nam in the end. I also took Joshua to meet John Edwards when he was running(he's still running). Bad choices all, but come on it's a learning experience You cannot be whipped for trying. The best I can say about voting-is that one must vote the best of the worst that we are offered Not much choice-particularly when it comes to autism and that's guesswork in itself.Changes from any president on autism? I can only plug my nose for so long.
I like the photos, Lin.
Maurine

Thanks so much for what you did. NOW WHERE'S THIS PLAN? PRES. OBAMA MUST DELIVER at last!!

Jennifer and Keith, London UK, parents of Harry Horne-Roberts RIP who had vaccine-injury autism, and whom we lost through medical negligence aged 20.

President Obama's autism plan is to spend $100 million dollars thru IACC over 5 years at 9 centers of excellence to study me.

Thank you Sam for being my sons voice for he is Autistic and non verbal. His name is Nate the Great and he 7 years old. We too advocate and have been recently meeting our representatives on behalf of FAU(Florida Atlantic University) CARD that stands for Center for Autism and Related Disabilities. They are a Center for families that are affected with Autism, they help you find doctors, OTs, PTs, schools, they help you get tested to see if you have Autism, they have support groups for siblings, young adult programs and the list goes on. Without them I have no idea where we would be.

I sit on their Parent Advisory Committee and was given the opportunity to meet some of my local Congressman and women. We not only need to fight for each and every individual with Autism but we need to educate for our Government is very ignorant or just hiding their heads in the sand. Promises are great but solutions are what we need!

I salute you Sam and Lin and THANK YOU FROM THE BOTTOM OF HEART, and I too pledge to fight for ALL AFFECTED WITH AUTISM!!!!! NEVER EVER GIVE UP HOPE SAM!!!!! GOD BLESS!!!!
SAM-YOU ARE MY NEW SUPER HERO!!!!!!!!

ALL of the candidates for President both former and current have some kind of ties to PHARMA! I think change withpharma ties will come extremely slowly and wil come from our representatives. What terrifies me is how some want to completely gut the minuscule safety net of service for adults with autism and children with autism whose parents are poor. The likelihood that my dear son and all of his peers with severe Autism and other severe disabilities will be left with next to nothing in the way of services is very very real and frightening beyond words. I cannot imagine what will happen if his services are cut so we can give the millionaires more tax breaks.
Do I want the BIg Pharma's but kicked?? YOU BET!! But it isn't going to happen for a long time. Not the way things are looking politically right now.

GO SAM.....GO LIN.....Y'ALL ARE OUR HERO'S...TY TY TY!

It is great to see little Sam advocating for autistic children, but overall I am very pessimistic. Both leaders and both parties get big donations from pharmaceutical cartels, hence I don’t expect them to go against pharma’s interests. Children will continue to be poisoned with toxic vaccines, until millions of Americans rebel against mass vaccinations. Nonetheless, between the two, I believe Obama in his second term is more likely to go against pharma's interests, as he will not have to worry about reelections. However, since his daughters go to private schools, he does not have to worry that somebody will push poisons into their bodies without his knowledge and against his will, and he may be largely ignorant about the problems with vaccines. His pharma advisors will surely convince him, that all these screaming parents with children maimed by vaccines are simply hysterical. May be the best choice is to ignore the elections and demonstrate that there is no real choice, as there is no real democracy in the US anymore.

Lin,
Congratulations to you and Sam! We have done much the same with our son over the last several years. I did get a few minutes with Obama just before he announced his candidacy for President so I know he is fully aware of the autism epidemic and the vaccine connection. While he has done basically nothing for our children, neither have most of the other politicians-from both sides of the aisle. Maybe when one of his children or grandchildren are vaccine-injured will we truly have his attention! I do urge ALL families to do the same thing-approach these folks at local events and share your stories. Maybe once they've heard hundreds of thousands of us they will do something to stop the epidemic and take care of those already injured!

Thank you, Lin and Sam! This made me cry first thing this morning. What is Obama's plan and what has he been waiting for? He said he was THE Autism President 4 years ago - so where has he been? I lean to the left but can he be believed? Can any of them?....Politics is political but human lives are on the line, an epidemic of them.

Way to go Sam! Although I really want to hear President Obama's plan for autism sooner rather than later.

I can hardly see the words through the tears this story brings me. You have helped your boy see that anything is possible. I hope this story gets even more attention. Thank you for taking us along on this ride!!!

Cute little red headed boy!
If I remember right he liked Rick Santorum best. me too.

That's a beautifully written article and those are terrific pictures of Sam. Thank you, Lin! I hope the POTUS has a good plan for children like Sam.

Thank you Lin and Sam for all you do for our kids and families! You are such an inspiration. I was reflecting back on the 2008 Presidential Debates, when the autism epidemic was mentioned at least 4 times by the candidates. Obama did lay out his plan of appointing an 'autism czar' and funding significant research toward stopping the cause of the epidemic. Unfortunately, the IACC has been sluggish, bureaucratic and the research funding for environmental causes of autism dwindled in the economic collapse. I hope that in this 2012 debate both candidates will be prepared to discuss a plan for stopping the rapid increase in autism, which gets worse year over year, make this a huge priority for the future, safety and health of the children of America. If it weren't for your persistence, Lin and Sam, I don't know if this would be a 'top of mind' topic for politicians aside from the economy and the war.

Great story... What a cutie your wee man is.. Thanks for doing what you are doing to address the candidates.
Now... As for Obama,,, when is he revealing his plan. It is a bout 4 years late.

Fascinating Lin. I'm still waiting for Obama's plan.

So proud of Sam and his mom Lin. I am so proud to call Lin a friend! THANK YOU both for what you do for our families!

Please know that our family .. grandparents, mom and dad, his younger sister, uncles, aunts, cousins, etc .. are very grateful and extremely proud to have the Wessels family
represent our family in the always emotional, sometimes downright unfriendly, often hostile .. political arena .. while Sam himself speaks so eloquently for our little guy who .. at twelve years of age .. cannot speak for himself.

Lin .. God bless your family for all you do.

Thanks Sam and Lin!

There is no one who stands up better for people with autism and their families than Lin, Mark and Sam Wessels. Thank you all.

I remember seeing Sam on television or maybe youtube, thinking how brave and honest our kids can be. Sam did a wonderful job saying his piece and in doing so I felt he did show the world "here we are" . I remember him talking about disabilities, and saying "mine is autism". Thank you for sharing , he is a beautiful child.

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