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.

Four Words

There are so many things I'd like to see him do. 

• Play with his brother.
• Eat a banana.
• Wave bye bye.
• Really, truly hug me.
• Play correctly with numerous toys.

The list could go on and on.  But those things, all of those things, I'd forfeit in a heartbeat for just four words. 

I've heard them from Owen countless times.  I know what they sound like.  But I don't know what they sound like from him.  I long to hear his sweet voice whisper them to me.  I picture the smile on his face as he would say them. 

Four words. 

I know he says them to me in his own way.  The times he crawls up in my lap and wants me to read him a book.  The times that only I can comfort him like no one else can.  The way he always checks to make sure I'm at therapy, to be sure that I haven't left him there.  I know he's saying them.

Four words.

I know that compared to that list that is seemingly a mile long, four words seems so minuscule.  But still, I lie awake at night, dreaming of what they might sound like coming from his sweet lips.  I think about the first time I might hear him say them.  Where will we be?  How old will he be?

Four words.

I love you, Mommy.

I hope and pray with everything I have that I hear them...someday.

Communication

By now, I think most of you know that Cameron does not speak.  And when I say does not speak, I mean he does not say words.  None.  However, that does not mean that he doesn't communicate to us in his own way.  He speaks, he just speaks much differently than your average 3 year old. 

A few weeks ago I found a list I had written early last year, tucked away in a notebook.  It was a list of the words Cameron had.  Yes, he did have words at one time.  The list was full of words like "Owen, cool, horse, dog, cat, elephant, tractor, hay, Elmo, Cookie (as in the Monster, not the food)..."  I could go on with them, but they are mostly like this.  Do you know notice a pattern with them at all?  With the exception of "cool," (which he only said when Owen or someone else said it to him, which is called "echoics") they are all nouns.  That's because Cameron mostly used his words to label things.  You could ask him, "Who/what is that?" and he would label it for you.  But he never said, "I want milk," or even "Milk?" as a means to get something.  I think this is a Red Flag that can often be missed by parents and doctors, because at the well-check, your doctor might say, "Is he talking?"  Well, yes, he was talking.  What the doctor needs to say is, "Is he using words to communicate with you or to you?"  They are two very different things. 

If he wanted something like milk or a snack, he would direct us to wherever that thing was, either by putting our hand on it, or trying to physically push us in the direction of whatever he wanted.  He still does this pretty often, but he is learning a new way of communicating with us in his various therapies.

This new way is called Picture Exchange Communication System, or PECS.  Though it is kind of involved and it has been said that if you are just using pictures you are not neccessarily using the actual PECS, the basics of it involve Cameron handing us a picture of whatever it is that he wants.  It is a very slow process, as he first has to understand what each picture is, and then understand that he physically has to hand it to someone in order to receive that item. 

There are generic PECS pictures, which look like this:

If you'd like to go more specific with it, you can take photos of different things and make PECS cards out of the photos, like this:

We started this system when we had AEA coming to the house a couple of times a month.  Though he did pick up the use of the "Snack" card and the "Milk" card, it pretty much stopped there because the therapy just wasn't as intensive as it needed to be in order for him to learn the system.

Currently, we just have a few that we use pretty regularly and they are stuck to the end of our kitchen island.

In his ABA therapy that we do at the house, he has what they call a PECS book, which looks like this:

They take one or two PECS cards out of the book and velcro them to the front of the book like this:

Then Cameron is supposed to choose the PECS card which has the photo of the object he wants, give it to the therapist, and then they will give him what he asked for.  He is progressing so well with this that the Supervisor thought the three girls that work with him might be recording the data incorrectly!  She just couldn't believe how quickly he's moving along!

In his Speech and Occupational Therapy at ChildServe, he uses PECS but they go one step further.  The PECS cards are attached to a GoTalk, like this:

This is a simple voice-output device.  The Speech Therapist puts 4 PECS cards on the GoTalk, and then records with her voice what each one is.  Usually, she will say, "I want..." and say whatever is on the card.  Cameron picked this up very quickly as well.  It didn't take him much time at all to figure out how to use it and the power that it gave him.  He is making choices with it all time in therapy sessions now!

We have been trying to figure out exactly how we are going to implement all of these at home.  Obviously, our goal is vocal speech, but until that happens, we need something in place so that our little guy doesn't get frustrated because he can't tell us what he wants.  We were going to purchase a GoTalk, but the one with 4 pictures is about $200.  You can get them with 4, 9, or 20 pictures on them.  Rather than have to keep spending money on these as he moves through each one, we started looking for different ideas.  We came up with the iPad!  There are lots of apps that you can download specifically for kids with autism, including all different kinds of communication apps.  We are going to be experimenting with one in his therapy first to see how he responds to it before we purchase one.  But his Speech Therapist thinks that the iPad is where communication for kids with autism is heading so we are hopeful that it will all work out for us!

So who wants to take bets that Cody and I could be playing with an iPad in the next couple of years because Cameron no longer needs it to communicate with us since he'll be talking? ;)

Why We Walk

Walking is not just about the money for us.  Yes, we want to further autism research but we also want Cameron to be seen and heard.  We know there are so many equally deserving causes out there, but for us, this isn't just a cause.  It's our life.  Autism is not just who Cameron is.  It's who we are.  And all we are trying to do is to give you a glimpse into our life so that you might understand us a little better.  I tried to think of a way to share the wonder that is Cameron, as well as trying to quickly explain why Autism Awareness is so important to us.  This is what I came up with...

Make an on-line slide show at www.OneTrueMedia.com

Please feel free to share it with anyone and everyone you know.  Thank you for supporting us in whatever way you can, whether it be monetarily, walking alongside us, raising funds for us, lending an empathetic ear, or simply cheering us along as we navigate our way through this journey.  Words can't express how grateful we are for the friends and family who continue to rally around us.  And because of your support, we know that one day Cameron will say, "Thank you" to you himself.