Saturday, September 24, 2011


I force myself to watch this show.  The actors are brilliant; so brilliant that I tear up several times per episode.  The young actor that portrays a child with Asperger's Syndrome is so talented that I see glimpses of my children in his mannerisms and when I see him struggle to fit in, like in this week's episode, I feel my heart clench and I clear my throat repeatedly.  It's just a show....

I watch the mother stand outside the fence watching her child sitting alone and I see the desperation in her eyes.  The pain is obvious and I wonder if that's what I look like when I look at my kids playing alone in a crowded room.

My kids don't like loud noises.  Overall, I think our home is fairly quiet for a house with four children.  It's almost like the lack of speech is a weighty silence that is taking years to get break through.  I think of the natural ebb and flow of sound that was part of my home before my children were born.  Each room held a radio playing a different station, our love of music and radio in general apparent.  A conversation that would mutually pause to listen to a perfect radio break was a common occurrence.

And then Bugabuga didn't start talking...

The speech therapist recommended that we turn off the radios.  She felt that it could cause auditory confusion.  My husband wanted to turn the radios off instantly but I couldn't bare it and I slowly turned one radio off at a time.  The silence was deafening.  There was no babbling and giggling.  There was nothing except the sound of my voice-constantly.  And when my voice was silenced from overuse, the only noise was a small mobile that was the only toy that was quiet enough that it didn't make them cry.

I close my eyes some days and remember the absolute terror that I lived with worrying that my babies would not speak.  I relive the hours of the CEO flinging her body against the wall and the feeling of helplessness.  I think back on the conversations that I had with Baby and being so proud that she spoke so well.  The memory of a speech evaluator telling me that she had no purposeful speech but was actually echolalic and the devastation that followed knowing that all of my children were on the spectrum.

As I watched the mother on Parenthood express her fear of pushing her son into mainstreaming, I am struck frozen with the decision that is looming in front of us.  Are we going to do it at the right time?  Can we tackle all of their needs in one school or are we going to have to split them up again?  Is Handsome going to go to school with Bugabuga and CEO or will we luck out and get a spot with Baby?  If we don't get that spot, will Baby be okay being separated from her siblings?  I don't want her to feel alienated from them because she is higher functioning.  My motherly instinct tells me to keep them together but then I look at each child and I know that we have to do what's right, not what's comfortable.

Bugabuga is in a new class.  The demands are greater and they are rattling her.  Her speech is diminished and her markers are harder.  It was the same way last year but she was able to pick herself up and excel.   CEO has been placed in a higher class.  Her beloved Miss Sylvia is in a different building and I know that she misses her.  I know that she has a hard time dealing with the change and I know that whereas Bugabuga acts babyish to deal, CEO rages and becomes violent.  I know that she cannot help herself and I pray every moment that she will adapt or be knocked back down to a smaller class.    Baby gets weepy and sits quietly introverted.  It's only been a week that they have been back to school but I am counting the moments until they find their way again.

I sit here with a hoarse voice, looking at Bugabuga asleep on the couch.  She fell asleep talking to me and listening to me talk for hours.  When I came home from work, she was mostly nonverbal.  I can't lose her.  So we went back to basics.

"Can you say Mama?"

"eh eh."

"I know you can speak.  I don't understand what you are saying.  Speak!"

"eh, eh."

"I'll tel you a story.  There once was a Mommy and Daddy that had a Bugabuga.  What did we have?"


"We had a Bugabugabugaubugabugabugabugabugabuga!"  I hold her little hand to my lips to feel the vibration.  "Come on, baby girl.  What does Mommy and Daddy have?"


"That's right! Bugabuga! That's you! Say it again."

"Bugabuga!  Bugabugabugabugabugabuga!"

"What's my name?"

"Mama!  Silly goose."

"I am a silly goose!  Now tell me about your day."

"I singed. I colored and danced!  Ohh, it was fun, Mom!  It was fun.  Miss Carol is my friend.  Krystal held my hand.  I played on the bike.  I jumped up and down and I did a circle!"

"That sounds wonderful!  I love to hear your stories.  Keep using your words, okay?"

"Come on, Mom. Come on, you silly goose." Her eyes lock onto mine and I know that she's okay.

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