please, mr president, step inside

Photo from the whitehouse.gov

**

While the “Event for Autism Awareness Month,” as it’s being billed, is taking place inside the White House today, a very different event will be taking place outside on its lawn.

According to USA Today, the White House Easter Egg Roll just keeps getting bigger. This year, the president expects thirty thousand people to come through the gates. For the sake of practicality, they will be divided into five groups of six thousand guests for two hours apiece.

According to the paper, there are some big-named celebrities expected this year – from singer Colbie Caillat to Kelly Ripa, the Harlem Globetrotters and even Elmo.

God, Brooke would LOVE to see Elmo – my eight year-old might just be his biggest fan. She watches Elmo’s World with no less than religious devotion. But six thousand guests jammed into two-hour time-slots?

Hell no.

The chaos of the crowds? The children moving unpredictably in every direction, the noise? Holy hell, can you imagine the noise? The babies and toddlers yelling and laughing and, heaven-forbid, crying?

The confusion and frustration of Elmo being visible but not accessible to talk to and hug? My girl cannot see a character without hugging him. Nope. Sorry.

And the actual egg rolling itself, with all its moving parts and the children – OY, a lawn literally crawling with children?

My girl would be a DISASTER.

So while the president is outside the White House today, playing on the lawn with some twenty thousand children and their families, I pray to God that he takes a break to come INSIDE to talk to those of us who parent some of the more than one million children in this nation who CAN’T be there. Not because they didn’t win a lottery ticket for admission, but because somewhere along the line they were handed a ticket for an entirely different journey.

Please, Mr President. Step inside your house today and talk to us about how we can work together to ensure that every one of our children has the chance to participate – to truly, fully participate – in this American life of ours. Egg rolling and all.

Our children deserve no less.

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47 thoughts on “please, mr president, step inside

  1. Extremely well said, Jess! I took my 9 year old daughter to an Easter Egg Hunt yesterday, and there was indeed a crying baby or two. There were sugary treats and the egg hunt divided into age groups.

    All of this was beyond my child’s ability to cope. So, we stayed inside our friend’s house — her yard having immediate access to the Easter eggs — where Zoe found a small electric keyboard belonging to my friend’s two year old. She huddled in a corner and plunked out the melodies to her favorite nursery rhyme songs.

    Between the baby crying, the two year old crying, the adults demanding Zoe’s attention, and the bazillion peeps, cakes, and chocolate candies, I was amazed my girl could stay for the two hours or so that she did.

    Eventually, she lost it, and we left. I thought of you as my husband and I guided our girl back to the car where she could calm down and get away from all the sensory overload.

    You’re doing an amazing job, and I am so grateful to you for your work.
    Best, Jen

    • jen, these stories kill me. last year, brooke went to a birthday party over easter weekend and the mom had organized an egg hunt. as the kids ran around the lawn, brooke joined in – in her way. she gave chase, thinking that they were playing tag. luau had brought her to the party. i’ll never forget him telling me how one of brooke’s classmates had chased her down and had given her one of her own eggs just to make sure that she had one. still tears me up and i wasn’t even there.

  2. Easter…a season of hope and faith. I know you will carry the torch for all of us….and yes, Obama, come inside and speak to people who struggle every day, 24/7, for all of our lives. Good luck, Jess.

  3. just in case i don’t have time to tell you later, you did great at the meeting today!!! ;) no matter what you say or what happens during the meeting, this community loves you dearly! we’re here for you, waiting to congratulate you, no matter what. you’ve taken being Brooke’s advocate to the limit. you’re simply awesome. :)

  4. “Not because they didn’t win a lottery ticket for admission, but because somewhere along the line they were handed a ticket for an entirely different journey.”

    Dammit, now I’m boohooing into my cake.

  5. Priorities. The President should definitely spend some time inside and not give all his attention to egg rolling, which is fun, but not of any great importance.

  6. This is so right…my one boy has down syndrome and is severely autistic and non-verbal and my other boy is moderately autistic and is also non-verbal. I wish that the movie producers out in CA or in NYC would make a movie about the severely autistic or the moderately autistic that are non-verbal instead of the high functioning autistic kids. Thanks for listening….

    Eileen

  7. Well put! Blessings as you meet the president. It would be nice to believe he will see this opportunity as more than a photo op; instead, as an honest glimpse into the true world of our amazing kids.

  8. As I stated when I shared this on Facebook: ..or, Mr. President…step inside one of the millions of kids’ homes for a day and see what it is like to raise an autistic child…while states like Arizona are threatening to cut DDD services to these families AGAIN!!!

  9. Thank you for this post… made me cry. My daughter is in love with Elmo too… she is watching him right now. I’m excited to watch the president and I hope he goes inside and talks with you. Thank you for your blog!

  10. I have the live streaming link you gave us on right now, 11:40 eastern time, and it is showing that stupid Easter egg hunt. I am soooo t’d off!

    Ugh. Hugs to you. Hope all is going well with you.

  11. I’d like to thank the White House for giving useless links to the online discussion and providing no new information in the space of about five minutes. Hope the egg-rolling was fun.

  12. Well talk about priorities live stream “concluded” after intro’s.Yet we can still see pleanty of egg rolling. So whats the big secret that the had to end the public stream? Go Gett’em girl and thank you.Wish we could be watching but we support you in spirit!

  13. It is such a juxtaposition, isn’t it? We apply to the egg roll lottery every year, but I can’t imagine quite what a nightmare it would be if we DID get tickets. We’d make it through and my kids would be able to hack it, but not in the same way that typical kids can. I’m hoping that you have a productive meeting today and that the staff members who attend REALLY LISTEN.

  14. You could not have put it any better Jess!! Hope you at least get to put your hand on the President. Possibly he’ll pick up some of your good vibes thru osmosis! I do pray he gets to look You in the face.. OX

  15. Wouldn’t it have been nice to have a blue egg for every child with Autism and in those blue eggs just $1.00 and that $1.00 would be donated to Autism Research – wow, now that would have been a statement. But I know – a lot of you are saying – that would be a lot of money and if you add it up it would be in the millions – not realistic… well guess what… think about what that means… if just $1.00 per child with Autism is too expensive than we have too many children with Autism and we need to stop and listen.. we need to research and find more answers… isn’t each child who struggles to live with some peace who struggles to fit into our society worth just $1.00…. hmmmm Just saying….

  16. Perfectly said!!!!! I believe more people need to walk in the shoes of our children and see the TRULY AMAZING individuals they ALL are!

  17. Pingback: » The White House Easter Egg Hunt… Do you think they need an IEP? Redefining Typical

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  19. Jess, it was awesome meeting you today. You speak for all of us that autism robbed simple life enjoyments. Well said and keep being the voice for the voiceless. Thanks
    Idil – Somali Autism Mom

  20. Thank you for sharing this… I especially enjoy the descriptions … With this I feel I can close my eyes and imagine I was there… Because I was there in spirit, so well represented by a fellow parent advocate. But also my teacher and friend. Thank you for taking me there.

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