dear mr president

*
Precious little in your life
Is yours by right
And won without a fight
 
~ Eleanor Mcevoy, Precious Little

*

May 3, 2012

President Barack Obama

1600 Pennsylvania Avenue NW

Washington, DC 20500

Dear Mr. President,

My name is Jess Wilson. I have the honor of meeting with your friend and advisor, Mike Strautmanis today. Mike and I share a bond that I wish were far more unique than it is—we are both parents of autistic children. I have asked Mike to pass this letter on to you.

Yesterday I visited the Smithsonian Institute’s Museum of American History with my husband and my two daughters—Katie , who is eleven and Brooke, who is nine and has autism.

I was moved to tears by a live exhibition that we saw there. A young woman played the role of a civil rights activist who took part in the Greensboro sit-in so many years ago. Since you have daughters of your own, I know that you won’t be surprised when I tell you that Katie rolled her eyes at me as she saw my tears begin to flow. But I couldn’t help it. Standing there listening to this young woman sing, “I’m gonna get my civil rights someday” was simply too much for this mother of an autistic child to bear.

You see, Sir, I fight every day for my little girl to be able to sit at that proverbial counter. I fight every day for the services that she and others like her so desperately need—not just to exist in this world but to fully participate in it.

I fight for a world that will no longer dismiss people like her as no more than a litany of challenges but will instead delve deep enough to know her, to value her, to celebrate her and to help her to find a way to contribute to it in return. Because, Sir, she has so very much to contribute.

I cried listening to that young woman sing because her words fortified my belief that the world that I seek is possible. Because our world—the world in which you are our President—is so dramatically different from the one in which those students made their brave stand for equality; so too the world before us can be radically different for my daughter than the one she inhabits today.

I believe in this nation.

I believe in an America whose people are not divided by the illusion of political difference, but who are instead united by their desire to make this world a better place for our children.

I believe in an America that is not torn apart by religious difference but instead thrives on its insistence that respect for that very difference is exactly what makes us who we are.

I believe in an America where every single human being is not just tolerated but valued, supported and celebrated.

I believe in an America in which we collectively treat every child as if they were our own. Because they ARE our own.

I believe in an America whose children grow up knowing that they have the ability to contribute to her success and to reap the rewards of that contribution—regardless of the color of their skin, the city in which they live or the intrinsic challenges that they may face.

I believe in an America whose people come together to support the 1 in 88 individuals who, like my daughter, has autism because they see that it is simply unconscionable not to.

I believe in the creative will of our people to find innovative ways to unlock the potential of those with autism and other developmental disabilities. I believe in the tenacity of those individuals themselves along with the legion of parents and doctors and scientists and educators and therapists who support them. I believe in our business leaders and our Main Street entrepreneurs. I believe that together we can create partnerships that will change the way we view disability and potential.

I believe in the autism community’s ability to do the work that it takes to make change happen from the bottom up. I do. But no matter how much I may want to believe that we can, I know that we cannot do this alone. If we are to create the America that I believe is possible, we need everyone to participate.

And we need you.

We need you to meet us halfway. We need you to lead with a strong, clear vision of the future that we know is possible. We need you not to follow the tide, but to work with us to shape the tide. We need you to talk about why it is so important to the future of this nation to invest in the autism community. We need you to talk at every turn about why we as a society must value—truly, deeply and systemically value—the potential of people with autism and to convince the non-believers why it is so richly worth the cost—from both humanitarian and fiscal perspectives—to do everything in our power to unlock it.

We need you to help us address the dramatically disparate levels of support for people with autism around the country—from state to state, zip code to zip code and school to school. We need you to help us create a system in which a child’s services no longer hinge on their parent’s ability to advocate effectively for them. That is simply not what this country is—or should be—about.

We need you to help us fund Early Identification and Intervention programs—the greatest hope for the next generation. We need you to help us create ABLE accounts allowing us to save money for our own children so that the government does not end up supporting them by default when we simply can’t.

We need a federal autism insurance mandate. I know that mandate is a dirty word these days. Call it what you will to make it more palatable, Mr. President, but there’s got to be some kind of uniformity in order to protect the rights of autistic individuals to receive care no matter where they live or what they or their parents do for work.

We need you to help us remove the barriers to building feasible, comfortable, safe housing for our children as they run headlong into adulthood. We need you to help us offer incentives to those who create employment opportunities for autistic adults, harnessing their unlimited ability to contribute to our society.

We need you to help us care for our nation’s 23,000 military dependents with autism. We need you to take autism services out of ECHO and put them back into TRICARE as the medically necessary treatments that they are so that the children of Wounded Warriors no longer LOSE ACCESS TO TREATMENT upon their parent’s required medical discharge and twenty-year veterans don’t have to step back into battle because they know that if they retire, their children’s care retires with them.

We need you to help us promote research and a renewed and reinvigorated commitment to real scientific inquiry and critical thinking. We need the money that you promised to fully fund IDEA. We need sweeping legislative change.

Last year, I wrote a letter to you asking you to light your house blue for World Autism Awareness Day. In that letter, I wrote the following:

Your girls are beautiful, Mr. President. They are poised and confident, graceful and self-assured. You must be incredibly proud of both of them. I ask you, Sir, what if Malia or Sasha had autism? What would you do to help them? I’m guessing the better question is, What wouldn’t you do?

I believe in an America in which we collectively treat every child as if they were our own. Please, Sir. If my daughter were yours, what would you do?

Please don’t hesitate to contact me. I would be honored to speak with you and to help in any way that I can.

Sincerely,

Jess Wilson

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62 thoughts on “dear mr president

  1. you forgot to leave your phone number and address Jess!! Add it now if you haven’t turned over that letter yet!! hugs You are amazing and what a beautiful letter you have written on behalf of all of us!! Thank you. I am proud to stand by you and defend our children!

    • lol – fear not, my friend. the president’s version has all my details (and the kids’ real names). i wasn’t going to put my address online!

  2. Wow! Love this. when you posed the question the other day about what message we would like you to pass on, the only thing I could come up with, was the idea that just a few decades ago, you could have been the president’s Mother. He should see the civil rights struggle as his own. You hit that dead on. Thank you!

  3. Wow! There are no words, Jess. I applaud your letter and form the bottom of my heart, and all Behavioral Therapists everywhere, I say “congratulations!” You have touched thousands with your words, courage, and heart. Keep up, because I know we will.

  4. Jess,
    Thank you for your commitment, leadership and guidance for families affected by Autism. We are behind you and so grateful that you put yourself on the line everyday.
    Semper Fi, Bernadette
    ( Marine wife and mother of Gabby who is affected by Autism)

  5. The pen is indeed mightier than the sword. You are our warrior, Jess. You wrote with such power. It was what we needed.

  6. You did it again. You managed to squeeze in all of our concerns. You wrote so eleoquently. You are amazing. I now sit and hope for a response….

    Beautiful. Thank you.

  7. Your ability to find the right words amazes me every time I read on of your posts. From your lips…

  8. Thank you so much! The Autism community is so lucky that we have you to fight for us. My David just turned 7 and yet not a day goes by that I haven’t worried about what his future holds. It started when he was 1, he never crawled only pointed and cried for things, they only thing he said was good-good before that. If it wasn’t for stumbling upon Early On when he was 2 I believe we would still be fighting to try to get him to talk. I can’t imagine how blindly we would be running around trying to teach him all of the things he has learned from the Special ED preschool. I know from talking to mothers in other areas that all of the help we received is not typical and it should be. I have hope that with people like you that it will become the standard.

  9. Thank you for being such a graceful, poised, intelligent voice for us Jess. Love you and yours. You are making a difference in this world. xo

  10. Bravo!!!!!!! Standing in my kitchen and clapping!!!! And yes tears running down my face. Thank you Jess…..I have no other word at this moment but thank you.

  11. As I read what you write and try to understand how any person could be so skillful, I swell with pride and thanks for you in this world. All of us are so very much better off because of you and that beautiful brain of yours. You don’t write a letter here, you write poetry and you make art with your words. If you don’t cause real productive wonderful things to happen, then they are just not reading your incredible discussion.
    I watch in awe at the magic you produce and the kind of person you have grown to be.
    I fall in love with you more every day if that is possible.
    Love you,
    Dad

  12. I am in awe of your eloquent and powerful way with words. Thank you for being our voice. (And a special thank you for including “other developmental disabilities” in your letter.)

  13. Thank you Jess for representing our entire Autism Community this morning at The White House. We love you!!

  14. Good Luck Jess, I know you’ll do us proud. You are doing more then your part to affect change. Thank you! xoxoxo

  15. Wow jess!!! Im speechless:) you got this girl;) thank you so much for all you do for us and our children…and thank you for being my voice!xoxoxoxo

  16. Your letter moved me to tears…thank you for being a voice for all of us “autism mommies”. I am in complete awe of your ability to put into words, with every blog entry, EXACTLY how I feel. Thank you, thank you, thank you.
    Jennifer Doll (Jackson’s Mom)

  17. This is beautiful, Jess. I hope you’ve also sent a copy to the editorial page of every major newspaper in the country. Your words are powerful. xo

  18. Truly Wonderful. So glad I read this at home so I could fix my makeup again before work. We’re all with you today, cheering you on.

  19. Semper Fi, my friend. Thank you for being the voice for our great kids.
    Karen Driscoll – Marine wife, mother of 3 (one with autism)

  20. With tears rolling down my cheeks, I thank you. Thank you for saying the words all of “us” want to say and more eloquently than many of us can. I don’t know how he could read this and not feel it resonate. You are a blessing. Thank you for finding and taking opportunities to make a difference for us all.

  21. Thank you Jess for once again standing up and speaking for all parents who have children with special needs. Your words not only represent autistic children but all children with special needs, and for that I thank you. As I have stated before I am the mother of twin daughters that suffer from cerebral palsy. My one daughter has had various medical complications and has spent the last couple of years fighting for her life. She has been granted a wish from the make a wish foundation, and she is currently on the waiting list to meet President Obama. This is the wish she picked and tells us all the time that she is inspired by him as he does not look like past presidents, and she does not look like most people her age, yet so many have the ability to look past an appearance and see more then what is on the outside. This gives her hope!!! She gives me hope!!! When her wish is granted and we as a family make our trip to the White House I will be sure to share all of our details with you. Again thank you…you words give me strength everyday!!

    Jenn

  22. Thank you, Jess, for speaking for all of us so eloquently. As my husband and I (and a group of highly dedicated and involved parents) spend hours upon hours this week preparing for a fundraiser to support our incredible PUBLIC inclusion preschool, your words resonate as usual. “We need you to help us create a system in which a child’s services no longer hinge on their parent’s ability to advocate effectively for them.” Our son with autism has been blessed to attend specialized inclusion programs at our local public schools, but we know that this is not the norm statewide, much less nationally. The only reason our inclusion program remains healthy and intact is because engaged, bright, determined parents have been loud, relentless advocates for the program. And we have raised funds to pay for the training that our teachers need, the high technology that helps our children learn, and the “low” technology that keeps our children regulated during the school day. It breaks my heart to think how many children nationwide remain underserved at best and, at worst, receive no appropriate services at all.

  23. Absolutely profound, amazing, courageous!! Thank you Jess for saying what all us parents of children with Autism want to say & do!!

  24. This fight is so important. Thank you for fighting for your girl, and for mine, and for the other brave and wonderful kiddos that make up this community. I’m grateful for your beautiful voice and how widely your words are being heard. Thank you, Jess.

  25. Wow… Absolutely speechless… Thank you for taking the time to speak out not only for your daughter but the millions of other families and individuals who have Autism.

    Thank you

    Signed Alexander Mott
    B.A. Education ’11
    Disability Studies/Community Inclusion concentration

  26. wow…..someday your daughter who rolled her eyes will understand why you teared up during that song. I would also question the Republican side to see what their view is on children with autism as well as other special needs. With election coming up the presidency is tossed up in the air. It would be nice to be able to live comfortably and still have our children with autism have their own source of income. Instead of the only way they can receive government help is if we are on some form of welfare and making very little to no money. The entire point is Obama needs to understand we are used to living independantly without relying on the president and government and I think many american’s (I know I would) like to stand on our own two feet and still get that help we need for our children. I recieved a bill by accident once from my sons behavorial appointments and WOW. I wish I was a professional behavorial therapist.

  27. THANK YOU that was so beautifully put. I could not have said that better and as a mother of a wonderful 8 year old autistic boy. That deserves a STANDING OVATION. THANK YOU GRACIAS

  28. As an autism supporter, and a person with Asperger Syndrome (a form of autism), I am insanely proud supporter of this letter.

  29. Thank you Jess. Having a daughter of my own with autism makes me want to do as much as I can for her. Thank you for being a voice for all of us. Thank you for making me realize I am not alone. Thank you for being…well,, you.

  30. Thank you. I am coming to see this as a great springboard to help all our beautiful children…yes autism is a challenge and it can be extremely hard some days; but on the whole my boy helps me to slow down and truly apperciate life and the small miracles that occur in our lives… Daniel is 9 and in a SPED program at our school using the STAR program…it has been great seeing him begin to speak more … Keep up the good work.

  31. given i don’t know much about politics but what i do know is that the federal government monetarily matches certain state programs when those dollars could be (and should be) shared with other programs. let me explain, my son has severe, low-functioning autism. the state would rather he be placed in a foster home or facility rather than remain at home. why? because the state gets matched federal dollars for my child to be there. the federal government pays the state money for those specific programs. as a biological parent, resources, funding and support are extremely low. in fact, so low that the states argument is that if my son would need any further support than the miniscule amount they have to offer then he would be better off in a group home. the cost of a facility, group or foster home is significantly more than the cost of adequate support in a child’s natural home where he belongs. where he is loved like no one else can love him. i know that outside placements may be necessary in some instances, i understand that said places serve a great purpose and require government support. but, we also need federally backed programs for in-home support. i would like see the federal government support disabled children in their own home.

    jess, if you have the opportunity to relay this message, i would be forever grateful. thank you.

  32. Well done Jess. This was a very powerful letter. Thank you for writing it. We have 9 year old twin boys with autism. Our family is relatively healthy and never needed much from the healthcare system until these guys were born. It’s been SHOCKING to me that our medical docs know so very little about how to help our kids. SHOCKING how much we parents have had to research and seek treatments on our own, many of which are paid for out of pocket. SHOCKING to me that kids who are on Medicaid, actually have more treatments available to them then us middle class working folk who have health care coverage. SHOCKING to me that the feds have not stepped up to stop the health insurance companies from discriminating against those with an autism diagnosis (allowing them to continue to deny coverage for treatments our kids desperately need). Instead, each state has to pass their own legislation. SHOCKING to me that my kids have gotten better support from the educational system than the healthcare system. SHOCKING to me that the CDC continues to support the current vaccination schedule (knowing full well that many of our kids are being sacrificed for the greater good). SHOCKING to me that the 1 in 88 was determined using 2008 data. This is a 6000% increase since 1980. I’m scared to know what the current ratio is using 2012 data. I’m sure it will be even more SHOCKING. There is no such thing as a genetic epidemic. And the Diagnostic Manual isn’t the problem either. Our country (our world) must make it a priority to figure out what is happening to our kids. Okay, down off my soapbox now. Jess, you have done a wonderful job of “staying calm, cool, and collected” in your letter. I believe that is the most effective way to get attention and action. Well done!

  33. I think you should have said that a vote from the President is a vote for him from all of us with loved ones connected with someone with Autism.

  34. your letter says it all so perfectly and precise. thanks you jesse for speaking for all those parents who are invisible. let’s hope the president is listening and will make the necessary changes we need made for our children.

  35. amazing…if this does not call him to action…I dont know what will…thank you for using your incredible opportunity to be the voice of our community…

  36. This is the most beautiful letter I have read in a long time. Thank you for delivering it to the President, and for the amazing advocacy work you are doing on behalf of ALL of our children. I am eager to hear about his response and more about your meeting with his senior advisor.

  37. Jess, I haven’t been reading posts much since Sept, but it is not because of anything you did, I have just been too busy dealing with personal things, so I just saw this today.

    Mahalo Jess for eloquently putting into words the message so many of us want President Obama and others to receive! I just shared you post on FB although I know many others have already done so.

    You still inspire me!

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