By Bonnie Zampino, Guest Blogger

The alarm goes off by my bed at 5:45 a.m.  I don’t have to get up quite that early to get ready for work.  But I get up this early so I can have an hour of quiet to drink coffee, catch up on Facebook, and take a hot shower.

Last night was a good night.  Brendan fell asleep late but easily and is still sleeping at 6:30.

Then the silence is shattered as he walks into my bedroom.

“Mom, its only 98 days until Disney Infinity comes out!”

I haven’t had enough coffee to keep up with this.  I think back to when Brendan was diagnosed with autism and how I thought that children with autism were all non-verbal.  I remember wondering how I ended up with the only child with autism who never stopped talking.  That was before I learned that autism is a communication disorder and even those individuals who can talk don’t truly communicate.

“This is the best video game!  There are 3 main characters.  They are Mr. Incredible, Sully and Jack Sparrow.  There are other characters too.  There’s also the girl who can do the force field, Mr. Incredible’s wife, and then, what’s his name?  The guy with one eye from Monster’s Inc?  But the rest are bonus characters.  Like Wreck it Ralph.  You put little spheres on the bottom of the figures and then you put them on, and you can play as that bonus character.  There’s a whole bunch of those.  Buzz, Woody, Lightning McQueen, that villain from the Incredibles…well, he’s a character too. The last time I checked it was 104 days until Disney Infinity comes out.  So it’s been 6 days since I checked.  This is going to be the best game ever.  I can’t believe Wreck it Ralph is going to be in it.  So is Vanelope.  And a whole bunch of other characters.  It has bonus characters from Monster’s Inc and Toy Story!  The starter pack is just the video game and the 3 main characters.  That’s all the starter pack is.  When you get higher you can collect more characters.  It’s a game for a bunch of things, including the Wii.  But we can’t get it yet.  We have to wait for 98 more days and then we can probably go to GameStop and get it.  Maybe we should get it for the Play Station instead of the Wii.”

Brendan cocks his head to the side and the words fade away as he retreats inside his own mind.  I watch as he wanders back out into the hallway.

“Good Morning, Sweetie.  How was your sleep?” I call to him, desperate to connect.

“Good” he says.

“Did you have any dreams?” I ask.

“No.” he says.

“Guess what?”  I ask.

“What?”  He replies.

“I love you.” I say.

“I knew you were going to say that.” he says.

And then he is gone, headed downstairs for some computer time before school.

I want to talk to him about last night, to find out what he felt and what he loved.  Those conversations don’t happen, though, in our world.

Last night was probably the most amazing evening I’ve had in my 9 years with my son.  In front of a packed auditorium, Brendan played Leo the Lion, the lead character in his school’s third grade play.  He was phenomenal.  He looked incredible in his costume that I made for him.  He knew every word of every line.  He didn’t falter once.  He didn’t freak out over the crowd or the noise or the flashes of the camera.  Last night was a night I never thought would happen after his diagnosis of autism shortly before he turned three.  This child who wouldn’t answer a question, wouldn’t say hello or goodbye, wouldn’t wave and wouldn’t play with me or anyone else stood on stage and acted alongside his classmates.  And the moms who hugged me afterwards – they knew.  They understood the beauty and victory of last night.  It was a celebration.  I wish he could tell me what it was like for him, if he was nervous or if he worried that he would forget his lines.  He can’t, though.

I’m tired this morning.  I didn’t realize what an emotional toll the anticipation of that play had taken on me until it was all over.

And now we are off of cloud nine and back to the real world.  I go downstairs to refill my coffee cup and reach out to run my hand over Brendan’s hair while he stares at the computer screen.

“Mom, did you know that Sasquatches, well, I can’t remember, but either their legs are long and their arms are short or their arms are long and their legs are short…it’s either one of those.  They make howls and screams and stuff like that.  They go in wooded areas mostly.  Did you know that you can barely spot them when they are out but sometimes you can and they are located in Georgia, Australia, Ohio, and West Virginia?  And Virginia, I think.  A whole bunch of places.  They can be three colors.  Ummm, brown, black and white and they can escape pretty quickly from humans.  Speaking of Sasquatches, Joseph believes in them now!  I told him the story of the first time I saw one and he started believing me!  He actually said that he would help me find one.  Yeah.  The highest they could be is at least 15 feet.  Well, Sasquatches.  I don’t know how big a Big Foot is.  I’m not sure if that is for both.  I don’t know.  But I have seen footprints before.  I heard a howl once and I have seen eye shine before.  Don’t you remember when you found that huge footprint?  The heel was sooo big.  That was a Sasquatch for sure…”

I sip my coffee and tune out the words while I gaze at my beautiful boy.  I interrupt.

“I love you, Brendan.” I say.

Still staring at the computer screen, he says “I love you too, Mom.”

All the other words fade away and I hold those five very special ones in my heart as I begin my day.

Date posted: May 7, 2013. Content created by The Autism NOW Center. Last updated: May 7, 2013.

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2 thoughts on “Words

  1. Hi. My name is Nicole Henson. I am currently working on my Masters Degree to get my BCBA to become a behavioral Analyst. I love working with children who have been diagnosed with Autism. They are such sweet kids and I love helping them. I am employed at an elementary school helping children with Autism in the general education setting. I also have a brother who was diagnosed with Autism about 11 years ago. He is such an awesome kid!

    For my masters program I am taking a class about how disabilities affect families. I am desirous to learn about other families perspectives on having a child that has been diagnosed with Autism. What were some of the challenges you faced? What were some of the successes you had? Were there certain things you were worried about? What is your perspective on your child’s education program? Have you had problems with the educational system? What are some of the joys your child or children have brought you?

    I really appreciate any comments and the time you take to make them!

    Read more: http://autismsupportnetwork.leveragesoftware.com/blog_community.aspx#ixzz2W8R7wmTU

  2. What a great article. I am so impressed with how Ms Zampino has grasped the idea of seeing the rose in the vase and not the dust on the table concept. What an enlightening and moving story. My son and I are involved with the Autism Speaks organization here in the Chicago area and as a singer/songwriter he has been inspired to write a song called, Look at You Now, that captures the strength and courage of individuals with Autism and their families. If you would like to hear it, you can search for Look at You Now, a song for Autism on youtube.

    Families like Brenden’s are the reason he was inspired to write this very moving song. Thank you Ms. Zampino for your story and God bless all families of kids with Autism as they journey through their very unscripted lives.

    Annivar Salgado
    Executive Producer, IMPS-UCP Seguin of Greater Chicago

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