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.

Sunday, September 11, 2011

Mommy's Miracles: Rose-colored glasses

Mommy's Miracles: Rose-colored glasses: I don't usually write about things as they happen. It takes me some time to water it down, remove the deep emotions-analyze the situation, ...

Rose-colored glasses

I don't usually write about things as they happen.  It takes me some time to water it down, remove the deep emotions-analyze the situation, find another way to make it work for next time, ignore the rough moments. I need some time to put on my rose colored glasses.

We went to the Central Park Zoo today.

I've been on vacation all week and have taken the family to a variety of places so that we can make memories with each other.

I have broken their routine.

"Okay guys, let's take the train.  Who's ready?"

"Choo Choo train?" Handsome asks.
"Come on, Mom.  Come on!  We go to the zoo and animals and the train.  We're going to have a great time.  I see animals and fishes.  Fishes,  ooooohhhh, I'm gonna have fun, Mom."  Bugabuga's mono tonal monologue begins.

We being walking down the block and the CEO jerks her hand away from me and takes off running.  My heart is my mouth.  I reach to grab her.  Oh God, please don't run into the street.  Please.  She's just out of reach; she moves so quickly.  She has no limitations physically but Bugabuga is holding my other hand and she cannot run.  She won't let go because she's listening to my request to hold hands.  I tear my hand away while lifting my leg to steady her  and extend my body to grab the CEO.  She's still moving and I take off.  I grab her hand.

"I don't like you Mommy."

"I know, but I love you anyway. Don't let go of my hand again."  Oh please, don't let this be a sign.  Please, let me have a good day with them.  I need this to be a good day-too many memories are chasing me today.  It has to be a good day.

We're on the train and the kids are in high spirits.  The CEO and Baby are hugging and laughing.  The CEO randomly starts crying.  The intensity is startling and people on the train are doing the polite look out of the corner of their eyes.

"You're okay.  You're okay.  Let's play a game.  I spy, with my eyes..."

"I don't like you MOMMY.  I want DADDY!  DADDY!  DADDY!"

"I know, but I love you anyway. Go sit with your father.  Switch out."  We always have two kids per parent.  That parent is responsible for them only.  We adjust our seating to work with the new responsibilities.  She smiles and cuddles against her dad.  The joy in her face is difficult for me to see.  She doesn't have a filter and I know that I'm inciting rage in her today.  My heart hurts and I want to cry but instead I smile and sing a song with Baby and Bugabuga.

"Mommy, mommy, mommy!  I need mommy! MOMMMMMMMMMMMMMYYYYYYYY!"  A struggle breaks out on my husband's side of the train.  Handsome is refusing to stay in his seat.  I make eye contact with my husband, "You okay?"

"I've got it.  Sit down, Handsome!"

"Mommy! Mommy! Mommy!"

"You want Mommy, fine!  Switch out!"

The ride continues in the same vain for the duration of the ride.  I'm tired before we even enter the Zoo.  Please let it be a good day.

We step off the train holding hands and the CEO jerks away this time from my husband. Oh, fuck no.  We jump instantaneously my hands filled and I grip one hand while holding Bugabuga's hand at the same time while my husband grabs the other hand.  We stand huddled together.  Our breathing shallow and terrified.  We regain our composure and walk away.  The CEO is having a rough day today.  She'll be better once we get to the zoo.

We walk the three blocks and the kids are laughing and looking forward to the animals.  We walk in and they are so excited!  They are smiling and dancing.  Running from exhibit to exhibit, taking pictures and squealing in delight.  Bugabuga almost stepped on a worm and we all squatted down to watch the worm hurry away.

"Sorry worm.  Oops!  Sorry worm."

Their expressions were filled with curiosity.  It was relaxing.  We all started laughing and enjoying the day.  It will be a good day.

We visited a 4D movie featuring Dora and Diego.  Bubbles, snow and water were involved.  It was so much fun and they, of course, saved the rain forest.

We sat for lunch.  The kids could barely focus enough to eat.  We struggled to get them to eat.  It's always a struggle.  I felt so sad.  They were talking to each other but not following our lead.  They needed to eat.  I looked away and I wiped at my eyes.  I cannot cry in public.  I will not cry.  My eyes locked with a man sitting across the way and I saw the compassion.  I swallowed and wiped a lone tear and refocused my efforts.  They ate lunch.  The day was really shaping up to be stellar.

We feed the animals in the Children's Zoo.  Bugabuga was so upset that we could not feed the ducks.  "They hungry too!"

We cajoled and distracted.  We made it out of the park after only another meltdown from the CEO.  We walked around to different stores and left each store as the hyperactivity impeded our progress.  The kids were smiling and laughing.  It's a good day.

The CEO was showing fatigue.  It was time to go.  We couldn't find a cab willing to take us home.  Finally, a kind cab driver took us in even though the CEO was screaming and crying.  She cried for at least 20 minutes of the 40 minute ride.  My nerves were frayed.  I called my parents.

My family was standing outside ready to grab a kid as I passed them out of the car.  They had them calm  by the time I finished paying the driver.

My mother feed us dinner and I watched them equalize.  My shoulders relaxed and I saw how they happily explained their day.  They had a fantastic day.

I could write this in a few weeks with my rose-colored glasses on but I won't because ultimately it was a great day.