#gladididn’tsaycamelot

 
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I’m meeting Joe Kennedy tonight (he’s running for Barney Frank’s seat in congress). For the last 10 minutes I have been wondering if there’s a way to work the word Camelot into casual conversation. #SoWrong
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~ Dairy’s Facebook status, Friday, April 13th, 5pm
 
 
Guess who just said that yes, he would absolutely love to come to my home and meet with some of my friends in the autism community. Here’s my card, let’s plan it? #GladIDidn’tSayCamelot
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~ Diary’s Facebook status, Friday, April 13th, 7pm
 
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Joe,
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It was such a pleasure to meet you last night. I never doubted Drew when he told me that you were ‘the real deal’ (I’ve discovered that doubting Drew really never works out) but I was nonetheless surprised by just how moved I was after hearing you speak.
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I share your hope that this nation can be a place where everyone believes that they can reap the rewards of their own hard work. I also share your belief that it’s possible. But I thread that belief through the knowledge that 1 in 88 children – 1 in 54 boys – are on the autism spectrum.
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At this time last year, I wrote a letter to President Obama. In that letter, I said the following ..

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My daughter has autism, Mr. President. And you’re right; I love her fiercely. I love her with a ferocity and a tenderness that can only co-exist within a mother’s heart. I love her so much that there is nothing on God’s green Earth that I wouldn’t do to help mitigate her challenges. There is nothing that I wouldn’t do to make the world less foreign to her, less hostile. There is nothing that I wouldn’t do to ensure that every day when she steps outside our door, she is met with tolerance and understanding and compassion. That she is seen by the world as a full and complete human being – not as a set of challenges encompassed by a single word. There is nothing that I wouldn’t do to ensure that her talents and unique gifts are recognized, fostered and celebrated throughout her lifetime.

Above all, there is nothing that I wouldn’t do ensure that she has the opportunity to contribute to our great nation.

(The full text of the letter is HERE.)

Your passion for fairness is palpable, Joe. Your belief that EVERYONE should be able to participate in and contribute to our society and see the benefit of that participation is why you have my support.

I am so grateful that you agreed to come to the house to meet with members of the autism community. We look forward to talking about just what it takes to ensure that ‘everyone’ includes people with autism.
 
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Warmly,
 
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Jess
 
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To learn more about Joe and his campaign for Congress, click HERE
 
Ed note: While I desperately wish that I could invite each and every one of you to my home to meet with Joe, I can’t. Firstly, my house just ain’t that big. Secondly, by doing this I am walking a very fine line between being public here on the blog and needing to protect the safety of my children here at home. For that reason above all, I have to limit participation to those I know in my ‘bricks and mortar’ life, rather than online. I wish that weren’t the case, but I promise that, as always I will seek your feedback and ensure not only that you are represented in the conversation, but that Joe sees it directly. Thank you for (hopefully) understanding. 
 
 
Ed other (really long) note: Despite a whole lot of evidence lately to the contrary, I hate politics. Abhor them really. I say that because I think it’s important that you know that I’m not a political animal by nature. I’m becoming one, however by necessity.
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My kid, our kids, everyone on the spectrum, needs more than we can give them individually. They need support from their local  community, society at large, and yes, local, state and federal governments. We can’t legislate change of heart. That is and will continue to be a whole other battle. But we can change laws to protect our kids from insurance discrimination, to create minimum levels of service and support, to institute early detection programs and automatic referral to Early Intervention, to support the educational programs that have proven to dramatically change outcomes for our kids, to protect them if God forbid they intersect with law enforcement and the judicial system, to help them transition from the school systems to adulthood, to encourage employers to offer them opportunities to contribute to our economy, to help create safe, appropriate places for them to live, to allow us to save what little we may have left for their futures. And on and on and on.
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This just isn’t stuff that we can do without support from our politicians at every level – from our City Councilmen to members of our towns’ Boards of Education to our State Reps to our Congressmen, Senators and yes, the President of the United States. They ALL have to get it. 
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So as much as we might not be political people per se, as much as we all may be completely fed up with the disastrous state of politics in this country, we don’t really have a choice but to continue to insist on being part of the political dialogue. And, just for the record, autism doesn’t have a party. As I said in the same letter that I quoted above, “This is blissfully apolitical. Autism is not partisan. It does not discriminate between black and white, privileged nor impoverished. It simply lands where it will and affects every aspect of an entire family’s life.” 
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At 1 in 88, when we get vocal, we’re pretty tough to ignore. Cause those one in eighty-eight kids have oh, say, two parents, four grandparents, some aunts and uncles and cousins, some friends of the family and well, when you add it all up and carry the one, that’s a whole lot of voters who care more about autism than pretty much anything else. So yeah, I hate politics. But I continue to engage every politician who, like Joe, is willing to listen.
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I hope you will too. 
 
 

20 thoughts on “#gladididn’tsaycamelot

  1. “When we get vocal, we’re pretty tough to ignore”. It’s both unbelievable and believable that all of this is happening because you make it happen. It’s a lesson to all of us. Thank you, thank you, thank you more!

    Love you,
    Mom

  2. I can’t wait to hear the outcome of this meeting. So much about politics makes me cynical these days too; it is refreshing to hear that there are some “real deals” out there, some with famous last names and many without.

    I imagine you can predict my two cents’ — programs that receive federal funding to insure uninsured children should not exclude services for children with autism. Period.

    Thanks!

  3. As I read this all I could think of is how grateful I am to know we have someone like you who is willing to speak (so beautifully, I might add) for all of us! Thank you!

  4. I hear you, Jess. As a grandparent, I went out of my comfort zone and attended “teas” (where candidates meet in peoples’ homes) for our township committee candidates and a League of Women Voters forum and was a single issue force to be reckoned with – our kids are growing up! What next? We already have a pretty good school program but more is needed. Thanks for the spur to action. hugs, gail

  5. If I may… because I feel you have absolutely spoken my language today… as usual…

    https://adiaryofamom.wordpress.com/2011/12/06/a-rant-a-book-and-a-plea-for-help/

    I am not a political animal either. I loathe the dance. But by necessity, I have found that speaking up is non-negotiable if we want change. Being persistent and urging others to speak for themselves is part of the deal. Applauding others for speaking up and then remaining sheepishly behind a computer screen is inexcusable when our modern-day elected officials are open for business on facebook, twitter and via emails and youtube. If you feel you are not politically savvy or that you do not have the nerve to speak up – type it. Click ‘share’, ‘post’, ‘reply’ on the politicians’ sites.

    Thank you, Jess, for getting into the ring in such a brazen way and speaking up for all of us. But more importantly, thank you for continuing to inspire others to do their part.

  6. Ugly “politics” makes me worry that we get the governance we deserve–
    dogma rather than education, vilifying rather than respecting, threats instead of compromise.

    But government is just us, all together, trying to agree about how we’re going to order ourselves, And to get the government we want, we have to get in there for politics in the best sense: educating others about our views, persuading, respecting. So you keep getting in there, Jess, wielding your persuasive powers–and the margarita!

    Karin

  7. Last night when I was driving home from work I found myself smiling in the car as I thought about you and your family going to the White House. You are doing such great things. Thanks for inviting us all along on this ride even those that don’t know you in the brick and mortar world.

  8. So now you are talking about my vote in congress as well as about my daughter. Please let us know about what Joe can offer us, how he can be part of our voice. Sometimes things can actually get done.

    • Linda,

      Thanks for writing. I’m a little confused as to what you mean by ‘what he can offer us.’

      I’ve invited him to meet with us in order to talk about what it is that we need and to open a dialogue with him about how best to go about getting it. I suppose what he can offer will be creative ideas on the latter and a promise to do everything in his power to represent our families should he have that opportunity in congress.

      While I’d be pleased as punch if politicians could approach us with a menu of services, I think it’s incumbent upon US to educate them on what our children need to succeed and contribute.

      Best

      Jess

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