white house part seven – the parting message

**

Diary goes to the White House. Please click on the links below (in blue) to read the full story.

Prelude – a message to the President

Part One

Part Two

Part Three

Part Four

Part Five

Part Six

*

After each of the breakout reports had been delivered, we heard closing remarks from Seth Harris, Deputy Secretary, US Department of Labor and Tony Miller, Deputy Secretary, US Department of Education. 

Following Deputy Secretaries Harris and Miller, Michael Strautmanis took the stage. According to the agenda, Mike is the Deputy Assistant to the President and Counselor for Strategic Engagement to the Senior Advisor Valerie Jarrett. For his sake, I really hope there’s a shorter version of that that he can use at cocktail parties. For my sake, I hope it’s OK to call him Mike.

Mike has been with the President since before he was the President. I am told that he was the one to whom (then brand-new) President Obama referred HERE.

I found it impossible not to like Mike. He is one of us. He is the parent of a child with autism. He gets the joke. He also understands why we’re not laughing.

As the last speaker of the day, Mike took the stage to wrap up the day’s events. He spoke first of the administration’s commitment to our community. He described their “intense focus” on making a difference today – each and every day – in the lives of people living with autism. He used words like “the fierce urgency of now” and spoke of the “sense of impatience” that the administration not only understood, but shared.

I desperately wanted to believe him. I was so grateful to be there – for the energy that was being dedicated and for the important work we were doing. But I just couldn’t reconcile “intense focus” with our President rolling Easter eggs on the lawn a hundred yards away and never coming into that room to acknowledge our presence. As parents of autistic children, we spend an awful lot of time with our kids standing behind closed doors, peeking in on a world in which our children can’t participate. Sadly, it seemed that our parallel universe was intact that day.

But Mike had far more to say. After speaking about the administration, he spoke about US. He leaned over the podium. He spoke without notes. He spoke to us as one of us. An in so doing, he reminded us of what seems so painfully obvious and yet somehow manages again and again to fall on deaf ears in our community.

“As a community,” he said, “we cannot stand divided. We cannot fight amongst ourselves. We must come together, we must stick together. We can argue behind closed doors, but when we open those doors we MUST be holding hands. We need to seek partners. We can only do that TOGETHER.”

It was all I could do not to rush the stage and shout hallelujah and amen.

How many times do we need to hear it, friends? How many different ways can it be said before it finally sinks in? We have turned ourselves into a political nightmare. Politicians who would help us – any or all of us – are terrified that if they do, they will bear the wrath of ‘the other half’ of the community.

We shoot ourselves in the foot every time we take aim at one another. We wrap our arguments in the rhetoric of extremism. We create then propagate division. We sneer at those who would seek a different path for their child – or themselves.

We write and speak of each other with careless disregard for one another’s pain – a pain we ALL should understand. We revel in snark and sarcasm, amusing ourselves at the ultimate expense of progress. We tear each other down when so much more could be achieved by holding one another up. We plant our feet firmly at autism’s poles and lose sight of the entire spectrum of humanity in between. (See Part Five – A Spectrum of Words)

And we spend our precious time and energy screaming that research dollars are being squandered because they don’t follow OUR thinking about OUR child.

Let me say this right now, my friends. There is value in ALL research.

Let’s say that you believe that vaccinations have never caused a single case of autism and that the anti-vaccination movement is reckless and endangers public health. (And if you believe the exact opposite, please keep reading.) If that’s what you believe, then I believe you should be the first in line PLEADING for more research into vaccines. Why? Because if you’re right, then you should desperately want the research to prove it seven ways to Sunday so that we can allay the fears of a generation of parents who are opting out of vaccines and leaving all of our children vulnerable to potentially fatal diseases.

If you believe that the anti-vaxers are akin to the birthers, then produce the damn long-form birth certificate and let’s move on. Because they’re not going away. And if I believed that my child were vaccine-injured, I wouldn’t either.

There is value in ALL research. And far more in research that is done cooperatively by scientists who can build on one another’s findings.

If you believe that the causes of autism are purely, 100% environmental, for the life of me I can’t imagine why you wouldn’t still be fighting for genetic research. It can lead us to an understanding of what it is that makes our children vulnerable to the environmental triggers that you believe are to blame. It can lead us to earlier identification of those at risk and help us find novel ways to both build immunity before the onset of the disorder and – most importantly to our kids RIGHT THIS VERY SECOND – mitigate its effects thereafter.

And biomedical research, as far as I’m concerned, is simply undeniably necessary. Too many of our kids suffer with GI issues and dietary sensitivities for anyone to argue against the need to find out why. For the record, my child suffers neither of these, but that fact doesn’t make it any less valid nor necessary. Thousands upon thousands of parents are following completely untested treatment regimes in their desperate search for help for their children. Test the programs. Research their efficacy and, for God’s sake, test their safety.

The system sucks. It does. Period. We can all agree – at least I hope we can all agree – that it’s mired in procedure and bogged down by process and it’s just too damned slow to affect real change in real time.

But we don’t have time to change the system. Our kids need help NOW. So if we are to move forward and get help, we have to find a way to work within it. As Mike says, we need partners. If we continue to scare them off, we’ll have nowhere to turn.

If we stand outside the walls of the legislature and throw stones at the gates, we may get ourselves on the news, but we have accomplished little else. If we make nice and play the game just enough to get ourselves inside we can change laws.

If we scream and shout at the autism organizations that we believe are doing our kids wrong or who we think are recklessly stoking the fires of fear and anger, we may manage to discredit them to the public, but then what about all the GOOD work they do? What happens to that once they’ve all lost credibility? And what about all the good work that they COULD do if we helped guide them toward it?

Autism Speaks just made a massive commitment to a GI study. It was a long time in coming. But it came because stake holders were wiling to stay at the table and TALK about what needed to be done.

Nothing will happen as quickly as we want it to. Ever. But it won’t happen at all if we allow ourselves to remain divided.

Mike’s last words were these. 

“Change happens from the bottom up. We can try to execute change from the White House, but you are the ones who are going to make it happen. It is going to happen block by block, school by school, community by community. This is about people. And we’re losing time.”

We’re losing time.

Those words haunt my dreams.

I introduced myself to Mike before I left. I thanked him for his leadership and for all that he has done for our kids. I told him I was a mom. No longer did I say just a mom. I’d long since banished the just. I stood up straight and said simply, “I am a mom.”

He pulled me into a warm, knowing hug.

And somehow, standing in the EEOB, right in front of the very presidential stage, hugging an advisor to the President of the United States seemed like the most natural thing in the world.

We are parents of children with autism. That connection transcended the fact that we’d never met. It transcended the bizarre setting in which we stood.

We are parents of children with autism.

God willing, that will transcend our differences as a community. Because we’ve got work to do.

Together.

Ed note: I tried to take notes as Mike spoke, but I had trouble keeping up, so quotes are pieced together from memory. I believe the quotes to be accurate, but if I misquoted or mischaracterized his words in any way, I hope that others who were there will let me know. 

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31 thoughts on “white house part seven – the parting message

  1. “There is value in ALL research. And far more in research that is done cooperatively by scientists who can build on one another’s findings.” Best line in your blog. B E S T!
    One love DOAM!

  2. Yes yes we must present united front. There’s room for all us and our beliefs and there’ room for the acceptance and understanding for each other just as we ask the rest of the world to accept and understand our kids.

    Love you but you know that.

    Jersey

  3. I’m going to rush you and say hallelujah and amen! This is brilliant. I hope every parent with a child with autism reads this. Can you imagine us – one big group together – speaking with one voice? You did that here.
    You amaze me everyday and I’m so happy you were there to share this with us all.

  4. So well said, and inspiring. I am so grateful to you for putting so much of your time and energy into this. It can’t be easy. I thank you for doing this and my children thank you.

  5. Wow! Powerful as ever!
    Thank you for this whole series of posts about your White House visit…so glad that you got to go there and be an integral part of that group.
    Enjoy your day:)
    Colleen (F5th on Twitter, as Sunrise Learning Lab was too long!)

  6. Mike, I so wish I could give you a high five… Jess, my god woman could you share a story any more inspiring? Thank you so much for going to the White House for ME. Being one of your friends in our community I really feel from these accounts of your visit that I had a voice in the room. This is exactly the unity in our community that I have mentioned in the past. We must strive for it. Thank you so much for your advocacy and passionate inclusion. For being a voice for all of us. And also for sharing your experiences with a vigor and dedication I can only try to comprehend.

    As far as the comment made about “losing time”, I love the idea behind it. I absolutely hate the fact of how close that hits home, how often I/we live that statement. It is really my hope that we are attempting to stop/slow the losing of time we are experiencing.

  7. Another incrediblly well written post Jess. Just amazing! And so very true. I just went to a school board meeting last night that was filled with parents, autism parents from all walks of life. We each were there for our own purpose to speak for own child and what they need. But something incredible happened during the meeting. The me’s and I’s became us and we’s and when that happened the school board had to listen! There is power in numbers but as you said only if those numbers are united!

  8. AMEN, sister! AMEN. So grateful to you for your unflagging commitment and the energy you give to bring us together. So proud to call you friend. xo

  9. ALL research is valuable. ALL. You are absolutely right to say that divided we stand no chance of real change. Our community must form an alliance, a treaty, something so that we can fast-track any and all information out there. Time is of the essence and with the recent release of the study in South Korea, we have a captive audience. We must act NOW to break down the metaphorical and very real borders that divide our community. I am in complete agreement with you, Jess. I wrote a vision statement for myself as an educator more than a decade ago something very close to those words. I never imagined I’d be living them now as a mother of a boy with autism.

  10. This was so powerful. Job amazingly well done, Jess! I’m so proud of you and all that you’re doing for your family and all the families out there!

    Love you,
    Mom

  11. again, i’m just so glad you were one of the ones there. super jess is exactly the person who needed to be heard, along with the other amazing people who attended. you have such a gift for communication, for conveying your passion, your thoughts, so yes, i’m grateful that you went and participated. thanks for sharing these amazing details.

  12. “But we don’t have time to change the system. Our kids need help NOW.”

    You said it.

    I’m so grateful to have found your blog, and that you got to speak for us. So often I have been hesitant to jump into the fray because I’m afraid someone will jump down my throat. We do all need to work together, and this micro-community seems like a great place to start.

  13. “He gets the joke. He also understands why we’re not laughing.” Your words are a painting of great import, Jess.

    “I just couldn’t reconcile “intense focus” with our President rolling Easter eggs on the lawn a hundred yards away and never coming into that room to acknowledge our presence.” You speak for all of us.

    I don’t believe I would have chosen anyone but you to represent our community, dear Jess. Thank you from the bottom of my heart, Isabella’s Booboo Gail

  14. Beautifully put. Mace doesn’t have the GI issues either, he doesn’t have severe autism, but he still struggles daily. I don’t believe his is caused by vaccinations, enviroment,etc., because I KNOW he has MY autism. And if you don’t think that cuts to the bone, to know I did this to him, you’re wrong. We don’t know why I have it or what mine is from, but we think it’s genetic, though there’s not enough family left to ask.
    I fight for ALL research, simple because we don’t know and that is too scary for me. The fact that I have 2 children & only passed it onto the youngest and the fact that I am the youngest of 2 girls & I have it. My sister’s second child has it, too, but my cousins do not. I can’t say no to any research, because I believe we need it all.
    In our public school there are several autism programs for the scripted & the non-verbal, all that are very successful. Unfortunately after speaking w/the head of special needs in our district, I found there is no program that fits my son; high IQ/low social skills/low motor skills. This news was frusterating and I wanted to scream, to demand that they do something now! Instead I calmed myself and asked what WE could do to help him, was there a summer program that I needed to put him in. She told me about this new pilot program and asked if I would allow them to test it on him. I nearly cried, our school is so far out and so small, we never qualify for anything. It’s in place for next year; one of the people from their autism department will observe and work w/him, then he will be able to teach the teacher exactly how to teach my son. It’s not a cure, but it’s going in the right direction.

    My granny used to say, “You’ll catch more flys with honey than with vinegar.” This saying is perfect for our community…I love that we have someone on the inside, someone who gets it. Thank you for this info, I feel better already.

  15. I needed this today; I’m typically Switzerland with regard to the community and let my emotions get the better of me the last few times. A regrouping and a Lindt bar later, and I’ve got my (much more tolerant) game face on. I can only speak for my experience, and respect the ones of others.

  16. jess, i know you are tired. and i so hope and pray that you can rest. if you do find a way to rest just for a while, i want you to rest well knowing/believing that you have done… so much. more than so much. for so many. and from the bottom of my heart i say thank you. thank you for writing, talking, taking the time, encouraging, helping, galvanizing, going to DC for us, letting us live it with you. thank you for telling the truth, thank you for loving your girls and your husband, sharing them with us. thank you.

  17. Jess, you have made such a difference in the lives of so many individuals and families affected by autism, by helping to bring more and more of us together. Everything you have done to raise awareness, to advocate for, and to support the community is bringing us closer and closer to this goal of unity. And we all know how much strength there is in unity. Thank you for helping and for inspiring!!

  18. Pingback: What I Heard « Autism Speaks Official Blog

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