Hope Followed by Disappointment

Do you know what was happening at the White House today?  I'm sure the first thing that popped into your head was the annual White House Easter Egg Roll.  And yes, you are correct.  Thousands gathered on the White House lawn to do this, among other things:

You'll find dozens of other links on the White House webpage all about this huge event.  They had musicians, story times, a game where you could play with your food, numerous celebrities, and, of course, the Easter egg roll.  Don't get me wrong, it looks like a great event and I'm sure many children had loads of fun.

But do you know what else was going on at the White House today?  Something much more close to my heart than some eggs rolling in the grass...an Autism Awareness Month Conference.  I'd like to link you to dozens of pages with lots of photos of this event on the White House website.  But, sadly, no such links exist.  None that I could find anyway.  There is this one video of Senior Adviser to the President Valerie Jarrett and Secretary of Health and Human Services Kathleen Sebelius speaking to parents, advocates, and experts.  Ms. Jarrett goes on about how the President is a supporter of autism research and rattles off the many things he's done in the past to show that support. 

After Ms. Jarrett spoke, Ms. Sebelius then took the podium.  The first words out of her mouth?  "Just be thankful you're in here and not outside with the 70,000 Easter egg hunters and the 85-degree weather."  Ms. Sebelius, I would bet my home and everything in it that every parent in that room would have given anything to be on that lawn, hunting eggs with their children.  Instead, they are at the White House, hoping against hope that their President will see how much it took for them to rearrange therapy schedules, write lists for baby-sitters, and prepare their autistic children days in advance for their abscence.  They are there to plea to the government for help in improving the lives of their children and the million others like them, in the hopes that one day their children will simply be able to hunt an egg in their own home, much less on the lawn of the White House with thousands of other children.

Ms. Sebelius went on and had the audacity to say that it is a top priority of the Administration to help those on the spectrum reach their full potential.  She went on to name the numerous things the Administration has done to better the lives of those on the spectrum.  She even went so far as to say that the biggest step they've taken to support those living with autism was to sign the Affordable Care Act into law last year.  While this law does require plans written after September 2010 to cover autism screening and developmental assessments, what exactly is it doing for us after the diagnosis, Ms. Sebelius?  She goes on to say that it bans insurers from denying children coverage from any pre-existing health condition, including Austim Spectrum Disorder.  Really, Ms. Sebelius?  Because the last time I checked, our insurance does not cover the ABA therapy my child so desperately needs and, thus, we have spent the last 8 months of our lives working our asses off to find another way to cover it because we simply don't have the thousands of dollars it would cost us PER WEEK to pay for it. 

And I know we are not the only ones.  Sure, there may be a select few that law is helping, the ones in the fine print, but the vast majority of families with children on the spectrum are fighting tooth and nail to get some kind of meaningful service for their children.

I remember when I first heard about this conference and how I couldn't wait to hear what Mr. President would say at it.  It wasn't until this morning that I learned that not only would the President not be speaking, he wouldn't even be in attendance.  No, he would be outside of the White House on Monday, April 25, 2011.  On the lawn.  Rolling eggs.  "Top Priority," you say, Ms. Sebelius?

I can't even begin to put into words the disappointment, anger, sadness, and shame I feel toward our President right now.  The fact that he thought rolling eggs on some grass held more importance than this Global Health Crisis completely baffles me.  Don't get me wrong, I am thankful they scheduled it.  But why?  Why, out of the 30 days one could choose for this event, did he choose the same date as something so apparently important that it completely overshadowed the significance and importance of the Autism Conference?

Today, Mr. President, while you were outside in the beautiful weather rolling eggs across your lawn with your family, I was inside.  I was inside helping my 3-year-old non-verbal son calm down because the feeling of his own pants is sensory overload to him.  I watched him cry because he had sat through two hours of therapy and simply could not do anymore.  I watched him cover his ears because the noise of a simple toy is too much for him to handle.  I watched him run around our house, flapping his ears, making raspberry noises, and standing on his head because his brain tells him to, for reasons unknown to me. 

Thousands of other mothers did the same thing as I today.  And many of us, as we watched our children struggle to do what those of us do everyday with such ease, hoped and prayed that you would go inside your own home, listen to a few of our stories, and hear about the struggles our children face.  But you didn't, because apparently today, Mr. President, eggs were your "top priority."

I hope the eggs were worth it.