Sunday, November 28, 2010

Four Months After Miscarriage

It's been four months since my missed miscarriage.  My body has healed.  My heart still has not. While the sonogram image of my baby whose heart stopped beating no longer haunts my every thought; I am constantly reminded of what I have lost.  Ironically, Norrin reminded me today.

During my pregnancy, I urged Norrin to be careful with my belly. "A baby is in there," I had said.  But in a moment of excitement, he would pounce.  I'd hold my stomach and give him a look.  And he corrected himself, "Careful with Mommy's belly." Then he would kiss me. Once on my cheek, once on my stomach. 

Having a baby after Norrin was not an easy decision.  And even during the pregnancy we had our doubts, our fears.  For us, for Norrin and for the baby.  I purchased The New Baby by Mercer Mayer (one of Norrin's favorite authors/illustrators) and a few other books to introduce to the idea of new brother or sister.  I incorporated the books into his bedtime reading routine.

After I lost the baby, I immediately removed the books from his bookshelf and never mentioned the baby again.  For the first time since the diagnosis, I was grateful for autism.  Pregnancy was such an abstract thought, Norrin could easily forget. No questions could be asked, no explanations needed.  It was not a reality for him and in some way it made grieving easier.   

This morning, after brushing our teeth.  Norrin lifted up my shirt and stuck his index finger in my belly.  "There's a baby inside," he said.  He looked up at me and smiled as if he suddenly remembered. 

"No, Norrin.  There is no baby inside."

Of course he didn't ask "why" or "how come," the way a typical four and a half year old would.  And again, I was grateful.   How could I explain such a loss to him, when I didn't even understand?

But it occurred to him, four months later, that there had been a baby inside.  Was he curious?  Did he remember?  And at the thought, become excited? In the last month, he's had more play dates.  Does he want a sibling?  Is he lonely?  I may never know.

My husband, the eternal optimist, said, "Maybe he knows something we don't know." 

Maybe?  Though I doubt it.

Or maybe it's Norrin's atypical way of telling me, it's time to try again.   

Saturday, November 27, 2010

Black Friday

In retail world, Black Friday is the day after Thanksgiving. The stores are crowded, the tables filled, the lines long. Holiday music is blaring from the speakers. It is sensory overload multiplied by one thousand.

Yesterday morning, I took Norrin to Macy's in search of a sweater that I knew would be on sale.

The sweaters were located right in front of the escalators.  Of course, Norrin wanted to go down the escalator.  And I knew if I let go of his hand, he would make a run for it.  I knelt down to search for a size, not letting go of his hand, but in fact holding it tighter.  So tight, it made my hand hurt.  When holding a child's hand there is no way to shop without making a mess.  And I did. With one hand, I moved some sweaters to another pile, flipping and tossing sweaters - tissue paper flying all over the place. I used to be a considerate shopper. However, shopping with a four year old on the spectrum all consideration is lost.  

I finally settled on two sweaters, because I couldn't find the one I wanted.  I went to the ladies shoe department, looking for a pair of boots that I tried on last week.  I waved the boots in front of the sales woman "I'm going to buy these boots.  Will you ring up the boots and the sweaters?"  

She looked me up and down. "Have you tried them on?"

I nodded and within minutes, she returned.  Norrin is playing with his cars and every so often I have to tell Norrin not to touch something or someone but for the most part, he's good.  

Of course it couldn't be that easy.  She didn't have the device to remove the sensor from one of the sweaters.  So I had to go back to the men's department to have it removed.  As we were walking out of Macy's I saw the sweater that I came in for, in the color and size that I needed.  It was the only one left.  I picked it up and went back on line. This line was long.

The woman at the counter was taking her time, folding everyone's clothes neatly, asking if they needed boxes and gift receipts. What I would have done for incompetence?!

Norrin was getting impatient and no longer interested in his cars. He started scripting; in a high pitched voice he says, "Oh No!  I've forgotten something really important." He hasn't forgotten anything, it's a line from Charlie and Lola.  He started squirming and asked to be picked up.  I calmly told Norrin that "we are waiting."  I stroked his hair, I squeezed his hand, gave him kisses, told him he's being such a good little boy.  But he's ready to go.  

The man in front of me, looked at me and Norrin.  "Benedryl usually works," he said.  

"Not on my kid."

We both laughed.  I am used to strangers putting their two cents in, offering advice or just staring trying to figure out what's wrong with him.  I don't let it bother me.

Norrin started pressing his face against my hand, his mouth open as if he's going to bite me.  He won't - he craves the deep pressure.  He then raised his hand to hit me.  "Don't hit Mommy,"  he said.

"That's right Norrin.  Do not hit Mommy.  That is not nice."

And then Norrin hit me.  (Not hard, just a little tap) The man in front of me turned around.  The cashier stopped ringing.  They both looked at me.  Judging.  I smiled and said, "he warned me."



Thursday, November 25, 2010

A Few of My Favorite Things -

This Thanksgiving I feel extremely lucky and grateful.
Here's my Top 10 List of what I'm thankful for:

10. My job. It may not be the ideal job, but it pays the bills.
  9. My cozy little apartment - it's home.    
  8. My writing - it's therapeutic 
  7. The teachers at Norrin's school and all of his therapists.
  6. My friends - They make me laugh even when it's really hard to.

  5. My family - I have a great support system. 
  4. My Mom -  I would completely lost without her.  
  3. My husband - He is a phenomenal partner.  
  2. Norrin -- (my list within my list)
  • He's said "I love you" all on his own
  • he's pointing;
  • jumping;
  • clapping; 
  • singing;
  • reading;
  • dancing;
  • playing appropriately;
  • riding his bike;
  • he's almost fully potty trained!
  • he's asking questions
  • he says please and thank you
  • he's realizing that on Halloween you get candy, on Thanksgiving you eat turkey and for Christmas Santa comes and brings presents
  • he's building his imagination
  • He's cutting and coloring
  1. That I'm able to appreciate all the little things every single day.  

Sunday, November 21, 2010

The Bronx Dreams Big

On Saturday, November 20th, 2010, a group of volunteers, parents and children gathered at Bronx Works to discuss ideas about the future Bronx Children's Museum. The event was sponsored by Bronx Borough President Ruben Diaz Jr. and Assemblywoman Vanessa L. Gibson

The conversation has begun.  

Currently The Bronx is the only borough without a museum dedicated to children. However, yesterday's group was passionate about making the dream of a children's museum into a reality. Set to open in 2013, the Museum will be located in Building J in the newly renovated Mill Pond Park in the South Bronx. The targeted age range is birth to eight. The Museum will be a true reflection of The Bronx community, its culture, diversity, history and beauty, to inspire and educate children.  

However, for this to be a collective effort, The Bronx Children's Museum needs your input. They want to hear what parents have to say; they want the opinion of your children. Yesterday's forum was the first but it will not be the last. The vision of the Dream Big Initiative, doesn't belong to one person, it belongs to all of us. Have your say. Be a part of the conversation.            

The Museum also needs funding. Donations may be sent to The Bronx Children's Museum  P.O. Box 1381 Bronx, NY 10451.

For more information about the Museum please see article in the NY Daily News and be sure to add the Museum website to your favorites.

*Please forward this information to other parents and educators.  

Monday, November 15, 2010

Three Little Words

I was up most of last night, nursing the boy's fever. It spiked to 104 and I hate when he's that sick.  This is the time when autism becomes really frightening because he's not able to convey his feelings.  It's a round of 20 questions and I played it alone.  "Does your tummy hurt?"  "Do you need to spit?"  "Does your head hurt?" "How do you feel?"  He stared at the walls, at the floor, at the speck of dust only he can see.

This morning I woke up at my usually time, ready to make my calls: to the bus matron, to the office, to my mother.  Letting everyone know Norrin was sick, he was not going to school and that I will be home with him.  The faint stink of last nights vomit still lingers in the air, even though I've sprayed Lysol and opened all the windows.

By the time I returned to my room, Norrin had moved from his bed to ours.  His eyes were half open.  I brushed his hair back, his face was hot and red.  I passed a cold wash cloth over his face; he swatted me away and I was so tired that I gave up, hoping the medicine will work.

He kissed me on the cheek. "I love you," he said, looking right at me.

The words took me by surprise.  I had never heard them before - well, not unless I've said it first.  He's never said it on his own.  Usually at bedtime, I'll repeat "Good night.  I love you." until he's said it back to me.  He usually says "goodnight," it's only recently that he's repeated "I love you." And on the rare occasion he did say it, it sounded scripted, as if he's just saying the words without any understanding of what they mean.  I've always felt wrong about this, like I'm forcing him to say something that he doesn't feel.

I've never doubted his love for me, but to hear him say it made it seem real.  As cliche as it sounds, they really are the words that every mother longs to hear.  Especially to parents with special needs children.  So many people take those words for granted, without realizing that some may never hear them.  Then are those who say the words so freely, the meaning is lost.                

I don't know when I'll hear those words again.  But there is something wonderful in knowing that he'll say those words only when he truly means them.       


Thursday, November 11, 2010

Working Holiday

It's Veteran's Day and I have to go to work.  The boy has off, as does the husband.  It's his first Veteran's Day off in more than 20 years.

Yesterday, my husband called me while at work and suggested I take the day off too.  "So we can go to the museum, do something fun." he said.

I can't tell you how many days, where the boy and I have had off and my husband has had to go to work.  So many days, I've had to wake up early and find new and exciting ways to keep the boy entertained for 8 to 10 hours.  And on these days, I managed to go to the market, do chores and entertain a four year old.  Just me and the boy.  No therapists.  And no naps.  

It is my husband's turn now.  We can do the museum or something fun on another day.

This morning I was able to hit snooze until 6:37 am.  I was able to wake up and not have to brush anyone else's teeth but my own.  I was able to take a shower and get dressed at my leisure without worrying about making the school bus.  I checked my email, applied lipstick, brushed my hair.  This morning I didn't have to make breakfast or wash dishes.  I didn't have to make any beds.  I walked out of the apartment, without throwing away the garbage.

This Veteran was able to get up, get dressed and go to work.        


Wednesday, November 10, 2010

"You look really tired..."

I must admit, I hear this a lot:  You look really tired.  In fact, I just heard it a few hours ago. 

As if I didn't know.  As if I didn't look in the mirror every day.  As if my tube of under eye concealer goes untouched.  I cannot help but wonder what is the use of night-time facial creams, de-puffing eye massage serum and department store cosmetics if the result is: You look really tired.  As if my exhaustion is fighting its way through my carefully applied make up.  

And I guess it's because I am really tired.  Because I didn't really sleep last night.  Or the night before.  Let's face it, I haven't had a good nights sleep in more than two years.  

Our days consist of therapists, evaluations, school tours and applications. EIPs, CPSE, CSE, OT, PT, ABA, BCBA and other abbreviations that do not make sense until absolutely needed.  I don't go to bed till after 11.  And by the time I fall asleep - maybe 12.  Often I wake up around 4 in the morning - running through my mental to-do list, hoping I can bore myself into a few moments of peace before the alarm clock rings.    

And then the boy doesn't sleep.  Though, I admit - it's gotten so much better.  We used to give him "night time candy" (melatonin) to help him relax and calm down so that he could go to sleep.  But then he would wake up at 2, 3 or 4 in the morning with so much energy and stay up for hours.   

Now that we've taken him off melatonin, he's sleeping better.  Though he still wakes up in the middle of every night and wedges himself between me and Joseph. He'll toss and turn and squirm for a while before finding that perfect position - all forty five inches taking over the width of our queen size bed. I suppose a fat flat foot in my face is better than having to physically get up and bed hop until the boy falls back asleep.   

I used to make such a big deal, spending hours of precious sleep ushering him back to his room.  Arguing, reasoning with a boy that could not be argued or reasoned with - least of all at 3 am.  Now I could care less.  If it allows me one more hour of sleep, I'll take it - gladly.  I am hopeful, very hopeful that he will grow out of it.      

Saturday, November 6, 2010

The Power of Imagination

I watch The Boy in fascination.  "Down by station, early in the morning..." he sings.  The first lines are the only ones I recognize and remember.  (The Husband sent me the lyrics last week,  I will have to memorize them so we can all sing together.)  The Boy sings in a high pitched voice and the rest of his words are mumbled.  Since The Boy's been talking more, trying harder to communicate, I always feel guilty when he says something I can't understand.

He is singing and playing with his trains.  Setting up the tracks, attaching the bridge, connecting it to the tunnel.  I am always amazed that he always creates the tracks in different and complex patterns.  When he's finished, he lines up the trains and starts pulling them through his pretend Thomas the Train world.  Calling each train by their proper name - Bertie,  James, Gordon, Toby - engaging in pretend play.  He creates dialogue between the trains.  Most of it scripted - a combination of lines memorized from books and cartoons - though he's using the lines appropriately, as if recreating a story line.  While scripting may be considered a self-stimulating behavior, I allow The Boy to continue since the elements of pretend play are there.  I sit with him and incorporate my own dialogue with the characters so that we are sitting and pretending together.

When The Boy was diagnosed with autism at 2 1/2 years old, he had no language and the developmental pediatrician said he had no imaginative play skills.  As a writer, to hear that my son lacked imagination seemed ironic and almost cruel.  I had such a vivid imagination, I wanted to build a career on it.  The Husband is a photographer and comic book fanatic.  How do two creative individuals produce a child with no imagination?  One of the joys of childhood is the limitless possibilities of pretend play; where the mind can go anywhere, before the grim reality of life sets in.

However, for all of my imagination, I never realized that pretend can be taught.  Through intense center based and home based therapies (ABA, Floortime, TEACHH, SEIT, Speech, OT and PT), The Boy has learned to imagine and to understand the concept of pretend.

The Boy loves his rocket ship tent and together we count down from 10 and then he says "Blast Off!"  The Husband shakes the tent.  The Boy giggles and I watch as he squeezes his eyes.  I wonder what he sees.  I imagine he sees himself rising above the clouds, floating in outer space.  He giggles some more and screams, "Again, Daddy!  Again! It's time to blast off!"  The Boy's eyes open again, and they are bright, glistening with excitement and joy.  He walks out of the tent, looks The Husband in the eye and makes his request again.  But before counting down, The Boy grabs his Buzz Lightyear action figure, so they can journey into space together.

We read books that introduce creativity and imagination like Harold and the Purple Crayon, Tar Beach and If You Give a Mouse a Cookie.  I encourage him to make up his own stories, using the books he loves as models.  I'll begin with, "If you give a Boy a piece of gum."  The Boy will say, "He will ask for some juice."  It doesn't always make sense, but it's a foundation.  We are communicating, taking turns, having a conversation, he looks me in the eye.

I like to imagine that The Boy will be a writer or some kind of storyteller.  One day, we may be reading his blog or a book that he's written.  And in that book or blog, he will introduce the world only he knows.  And we will be awe - because it's a world no one else could have imagined.  There was a time, when I couldn't have seen this.  Just as The Boy needed to learn the concept of pretend play, I needed The Boy to restore my sense of imagination.

Tuesday, November 2, 2010

The White Rabbit

I'm late. I'm late. For a very important date.  No time to say Hello. Goodbye.  I'm late, I'm late, I'm late.  -- 
The White Rabbit

I feel this is how I must look to the outside world: hands on head, brows furrowed, eyes closed in concentration, constantly checking the time and frantically running.  There is always a meeting to prepare for, an IEP or an IFSP to review, a therapist to call, a therapist to see, a bus to wait for, a question to ask, an appointment to schedule, a new therapy to research.  

And now, as Norrin is about to turn 5, I am in the midst of researching and touring schools, reviewing the NYS special education law and regulations, and preparing my case against the Committee of Special Education. 

There is still the supermarket to get to, the bills to pay, the laundry to wash, fold and put away, the apartment to clean and wait - did I lock the front door?  And while at work there's the document to revise, the daunting stack of papers to file, the conference call to schedule, the meeting to plan, the expense report to calculate, the bosses to appease.  And it's Tuesday night, my school night.  Did I read the handouts, bring my notebook, or complete my short story for submission?

There is dinner to make, dishes to wash, the boy to bathe, the bedtime story to read, all before its time to tuck the boy into bed and kiss him good night.  And then there's my husband. And all we want is at least 5 minutes at the end of our day where we can just be the people we were before we became parents.  Some days are more successful than others.   

I feel like I'm late for most things, as if there is always a countdown to something.  Like there is something terribly important I can't remember. Like there really is no time to say hello or goodbye.  I'm always trying to catch my breath, constantly scrolling down my mental to do list.