Just Show Up

“Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: You don’t give up.” ~Anne Lamott

I am just a mom.  Before sitting down to write this I had just returned from taking my kids to swim team practice, and I need to leave soon for our weekly trip to the library.  I’m on the PTA board.  I organize the neighborhood Fourth of July bike parade.  I help my kids with their homework.  I long ago stopped watching TV because I can’t stomach the news anymore and therefore know little of what goes on outside my bubble that is my suburban life, albeit a life with autism.  I have bigger fish to fry around my house than to be concerned with what is going on in the local news, or who is going to win the next American Idol.  I have a son to recover.  My sole mission is to make his life the best it can be.  I study and read medical journals, research interventions and advocate for him at our school and in our neighborhood so that he has the best shot at an independent life that he can have.  On the local front when it comes to my son I am a rock star.  When it comes to the bigger picture of autism advocacy? Not so much.

But then it happened.  The call was put out to all autism parents who lived in the DC metro area to attend an IACC (Interagency Autism Coordinating Committee) meeting where the Canary Party was going to be protesting Kathleen Sebelius, Secretary of Health and Human Services, and the inept IACC.  The premise was that we would turn our backs on Secretary Sebelius the way she has turned her back on the autism epidemic. Anyone who could possibly attend was encouraged to get to DC to demand that the panel take the autism epidemic seriously.  I answered the call, along with The Professor who made the trip down to Washington with her children from NYC.  Political activism is well out of my comfort zone, but the more I learned about the IACC and the lack of accountability plaguing this committee, the more I knew I had to go.

So this suburban mom packed her kids in the car and went to Washington.  Armed with some snacks, my phone, a mess of silly bands, a squishy brain stress ball and little else I headed to the Canary Party press conference. I had no idea what to expect but knew it would be an adventure, especially with two kids in tow.  I was more than impressed by the message being sent out by the autism community.

I was unable to attend the morning session of the IACC meeting with my kids, however Dan Olmsted has written a full account of the day’s events at Age of Autism. I was able to listen to a portion of the meeting at home before we left for the noon press conference. What I heard was appalling. At one point, after two committee members mentioned the urgency needed in addressing the autism crisis, Kathleen Sebelius actually stated that she ‘appreciated’ the parents’ sense of urgency, but that the IACC was doing it’s job and they are on top of this autism thing. Yeah, right.

We arrived at the hotel just before noon and made it to the press conference in time.  Almost as soon as we entered the room the advocates who would be speaking at the press conference started to arrive.  Mark Blaxill, Jen Larson, Jake Crosby, Mary Holland, Katie Weisman, and Katie Wright filed in and the press conference began.

Speaker after speaker expressed their outrage at the IACC and the fact that these panel members patted each other on the back during the morning sessions and congratulated each other on a job well done, despite that fact that the autism rate has essentially doubled since the committee’s inception in 2006 from 1 in 166 to 1 in 88.  They were angry that despite the hundreds of millions of dollars spent by the committee, the focus of research has been genetics.  Mark Blaxill outlined the actions being sought by ten national autism organizations.  You can read the letter to Secretary Sebelius here. In general terms they are:

  1. That Secretary Sebelius declare autism a national health emergency.
  2. That the persons who have been in charge of autism policies be fired, namely Dr. Insel who is the chair of the IACC.  The autism rate has doubled with no accountability.
  3. That past autism funding be studied to see why the majority of the money was spent on genetics, despite the fact that genetics is not the predominant cause of autism.
  4. That the day of birth hepatitis B vaccine be discontinued as there is no medical reason for this vaccine to be given at such an early stage of life.  Unless the mother is infected, the vaccine should be given sometime around puberty instead.
  5. That the Government Reform and Oversight Committee hold hearings to explore conflicts of interest in federal activity, including the Vaccine Injury Compensation Program and the fact that they have been awarding compensation for autism as a vaccine injury for 25 years.

These action items seem more than reasonable to me, and, in fact, seem like common sense.  Why should someone keep their job when they have not accomplished what they were hired to do?  Why shouldn’t the committee be accountable for their actions or lack thereof?  Why should babies get a vaccine the day they are born that isn’t medically necessary?  These are logical demands that were first presented to Secretary Sebelius on April 4, 2012 in a letter which was completely ignored.  We can only hope that this letter is not disregarded again. We can also only hope that the public will start asking WHY? with us. Think about it… why do we have to continually ask that these seemingly logical steps be taken? Makes me wonder.

Many of the press conference speakers were able to address the IACC during the half hour allotted for public comment.  Overwhelmingly, each public comment demanded that the committee dedicate resources to researching the role the environment plays on autism causation.  Parents want answers to the questions surrounding vaccines and their relationship to autism.  From the public, the direction the committee should take was clear: stop spending money searching for genetic causation and start looking at the environment.  Again, this is reasonable, logical and absolutely necessary for there to be any headway in stopping this epidemic in its tracks.  Mark Blaxill’s public comment sums up the feeling that parents have about the performance of the IACC:

Being at this event in Washington DC was humbling and I, as a parent of a child with autism, cannot thank the Canary Party and EBCALA enough for their work tirelessly advocating for our kids.  All of our kids.  As parents, it is so difficult to see beyond our family and our child with special needs.  And for you parents of children who are unaffected by autism it is even more difficult to see this crisis for what it really is, but the autism epidemic is a crisis of elephantine proportions and these children are going to grow up, get older and come crashing down on the system like a tidal wave.  This crisis affects us all.

Should the number of children affected continue to grow at the rate that it has been, autism will touch us all. Everyone is a stakeholder in this and you will be affected by this crisis in one way or another. Perhaps it will be a grandchild that gets diagnosed. A niece. A cousin. Perhaps it will be the tax burden placed on your children, or your grandchildren for the amount of care that this tidal wave of kids will need. According to the American Psychological Association, it will cost approximately $6 million to support an untreated autistic person to age 50. Not one of you reading this will be unaffected by autism in the end unless we take action NOW to find the causes.  Research dollars should be earmarked for prevention, treatment and recovery. Prevention. Treatment. Recovery.

So what will you do? You Accidental Activists out there… you are being called! If we all take up the mantle and give some small bit of our time, we can make a difference. Get involved with the Canary Party. Write your Congressmen; it actually does make a difference. Or do what I did. Leave your comfort zone and just show up. Bring your kids if you have to. Even if you don’t know the key players, make an appearance. Find some way to let your voice be heard for our children, our grandchildren, our nieces and nephews, our neighbors, our next generation. This is too important to be silent about anymore.

There is one new member in the fray who will just show up, a kid on each side, and will demand that this epidemic be taken seriously.  Count me in.
~Sunshine ☼


For more blogs by Sunshine, click here.

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22 Responses to Just Show Up

  1. Pingback: AnneDachel.com » Blog Archive » Just Show Up | The Thinking Moms’ Revolution

  2. Nicole says:

    All four of the kids in the photo should take a bow. They did great.

  3. Diana Gonzales says:

    I’m very guilty of saying “somebody should do something about this” All along not realizing I AM SOMEBODY! Thanks for the mirror Chica! Emails have been sent and I will be coming up with ways to get attention for the things WE need “the man” to spend the money on. Sure research is great, but what about the thousands that are all ready affected? Why are we expendable?!?! WE need an IN THE MEANTIME PROGRAM that helps US recover OUR children in the WAYS we see fit. YES, by all means find the cause but take care of those already affected by setting up programs and therapies geared to recover and headed by the PARENTS of recovered and recovering kids! Okay, I’m done,

  4. Blaze says:

    Sunshine, thank you to you and Prof for taking the time to go…we have so little voice, in part because we are so busy taking care of our sick kids that we cannot afford to leave our houses even if we could find someone to watch the kids. Every time we can, we need to go. They need to see us. They need to know how many of us are out here. You guys ROCK!

  5. Kati says:

    Bravo, and thank you on behalf of moms just doing the work and unable to show up that day.

  6. nhokkanen says:

    Thank you for attending and posting this excellent report! I used to be one of those people who thought “somebody should do something.” Eventually I realized that the four-word sentence contains three weasel words and one action verb. In the political struggle for our children’s health and future, each and every autism parent’s voice is needed.

    • Sunshine says:

      Oh, I love that. “Three weasel words.” Yeah, I got to the point that I had to make it, “I must do it” rather than “somebody should do something.” Been very guilty of passing the buck for years.

  7. Tina says:

    AMEN!!! God bless you for going. Praying for this epidemic daily. So glad you got to go even though it was way out of your comfort zone!

  8. Wendy Frye says:

    Wow! What you’ve done Sunshine is given all of us “Suburban Autism Moms” something to think about – how to use our Voice to help our children. Someday we should all show up collectively at Target parking lots, with our kids (and support staff, snacks, etc) all across America and in unison turn our backs on the people in the system who need to leave now! I’ll be writing a letter to my representative today that will SURELY land me on the FBI watch list. It’s go time!

  9. I wanted to go so bad and I was so close as our family was traveling back to Florida from a vacation on Cape Cod. My family obligations kept me away. Who is going to keep my 16YO daughter (PDD-NOS) on task as she continues to take courses online because she failed the state test and has to take support classes leaving no room for taking classes that support her strong artistic side? My other daughter who is on the spectrum also just totaled her car driving too fast for road conditions during the recent tropical storm. She is very impulsive and has trouble with depth perception because of her vision processing disorder. She no longer has normal eye contact and is clumsy always full of bruises on her legs because of the Dpt that was required for middle school. She already suffered ear infections all through life until high school when she had to have a tympanplasty to keep from losing her hearing in one of her ears completely. This is a 23 yo girl who is a very talented classical singer who just got a degree in Vocal Performance at FSU.
    I didn’t make the autism vaccine connection until I saw the research at a DAN conference in January 2008. Since then I have not rested in telling everyone I can through word of mouth and the internet. I will continue to do so. I worry about my husband’s niece who just had a baby. I’ve told her to educate before you vaccinate but did she?
    Just this morning on the news in our town an autistic boy ran into the street and was hit by a car and then was run over by another one. Someone was with him but he got away. He is now dead.
    I’m thinking about writing a letter to the editor but will they even print it or want to hear it? As tired as I am in hearing all the tragedies that has occurred on something that being purposefully done to our children…..I WILL NEVER GIVE THIS UP!!!!!

    • Professor says:

      Write the letters even if they don’t get printed. When they’ve gotten enough letters SOMETHING will click in their brains and that’s how we’re going to turn this thing around. One. Mind. At. A. Time.

  10. Lj says:

    Sunshine ! U have me sobbing this morning! I love u! We should all be humbled and grateful 🙂 xo the rev

  11. David Browne says:

    Sunshine – your glowing account of your selfless experience was inspired. Thanks and may your call be a beacon to others to keep autism glaringly public and on the short list of politicians must-do issues until we’ve sorted our tragedy out…

    • Sunshine says:

      You are kind…but like I said. I am just a mom. Anyone of you out there can do the same thing. Show up. Bring a phone, take some pics. Tell your story. Write a letter. I was very glad I made the decision to go despite not having childcare for my kids. The kids were troopers too!!

  12. Alison MacNeil says:

    What you are reminding us here is that a parent doesn’t need to have a Ph.D in political activism to get involved in the politics of Autism. You don’t even need to get there on time, have a sitter or know what room to go to…just go. You are also reminding us that if you want to get something done – send a mom! Big thank you to your two boys and the Professy’s two beautiful kids for putting up with this meeting.

  13. Marco says:

    “Vaccines don’t cause autism.
    Vaccines don’t cause autism.
    Vaccines don’t cause autism.
    Vaccines don’t cause autism.
    Vaccines don’t cause autism.
    Vaccines don’t cause autism.
    Vaccines don’t cause autism.
    Vaccines don’t cause autism.
    Vaccines don’t cause autism.
    Maybe if I say it enough, it’ll be true.”
    -CDC, AAP, VCIP, IACC, Big Pharma

    • Professor says:

      Yep. That’s their strategy. According to Alcoholics Anonymous, doing the same thing over and over expecting different results is the definition of insanity.

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