Declarations of Love (Autism Style)

On Monday I came home later than usual. The Boy held the door open for me, watching as I walked down the hallway. He waited for me to come in before running back to his room. No hello. No kiss. No hug. 

The Husband later told me that minutes before I rang the bell, The Boy stood at the door and burst into tears. When The Husband asked what was wrong, The Boy said "I want to see Mommy."

Later The Boy sat next to right on top of me. "Norrin why were you crying?" I asked him.

"Because, I missed mom." 

***

Every Wednesday it's the same thing. The Boy gets off the bus, smiling brightly and asks, "Can I get ice cream?"

No hello. No kiss. No hug. 

Don't get me wrong, I am grateful that he is capable of asking an age appropriate question. But I wonder if his smile is for me or at the thought of a Mr. Softee ice cream cone.

"Who do you want to go get an ice cream with?" I ask.

The Boy reaches for my hand as we cross the street and says, "With mom."

*** 

Last night I was sick with a fever. The Husband gave me medicine and within minutes, I was feeling drowsy. I lay in bed, wrapped in my blanket when The Boy pounced on me. "Mommy's sick," I said, "please let me rest."

"Do you need to spit (throw up)?" The Boy asked. And before I could answer, he said, "I'll go get the bucket!"

The Boy ran down the hall and back. He placed the bucket on the floor next to me. Then he tucked my blanket around my shoulders. And he let me sleep.

***  

What declarations of love have your children shown you this week?    

  

Love Accidentally

We met by chance.  I was a receptionist.  Joseph (The Husband), a Fed Ex courier.  Eleven years ago, he delivered a package.  He's "been delivering one ever since." The Husband loves to add that line.

What made it a chance encounter? 

(a) It wasn't his regular route.

(b) I had quit that job, started a new one, only to return two weeks after I quit.  I met Joseph one week after I returned.  

(c) I had just moved 10 minutes away from where he lived.  

Fast forward, three years after our chance encounter.  Joseph and I jet set off on our first vacation: Dominica - the "nature" island.  (It's truly a place untouched by commercialism.  We cannot wait to return with The Boy.)   

In order to get to Dominica, we had to board a small propeller plane in Puerto Rico.  Now, I hate flying in general.  But propeller planes? Scare. The. Crap. Out. Of. Me!  

And what was supposed to be a 30 minute plane ride, turned into 3 hours of flying around in tropical storms and turbulence.  The whole time I squeezed Joseph's hand and he reassured me.  Looking out the window, all I could see was fog.  No land.  No water.  And all I kept thinking about was Joseph and I plummeting to our demise.  (Did I mention, we watched Cast Away the week before our trip?)  We circled the airport a few times, the pilot attempted several landings but the turbulence was the worst I've ever experienced.  

At one point, I turned to Joseph and declared my undying love.  I may have even started to cry.  (I'm a tad dramatic and do not do well under pressure.) And then we started at talking about something else and I think he said something about us getting married while we were in Dominica.  I mean, it's all very foggy (no pun intended) - after all, I seriously thought the plane was going to crash into the ocean.  Come to think of it, maybe that's why I got the proposal...    

After a few more attempts to land on Dominica, the pilot flew back to Puerto Rico for the night.  The next day, we landed safely in Dominica.  That evening Joseph and I talked to the event planner at the hotel and by the end of our stay (6 days later), we were married.  No fuss, no muss - just us.  

One year after we were married on Dominica, we had a reception to celebrate with our family and friends.  

1 year after our Dominica wedding

And three years after we were married, The Boy was born.  And that was unplanned too.  

Some things are just better that way.        


The post was inspired by Mama Kat's Writing Prompt "Married? Tell us the story of how the question was popped."

Connecting the Pieces

Whenever I come home from work, I stand in the doorway as my mother calls out to The Boy, "Look who's home.  Come and say Hi to Mommy!"

I wait for a few seconds with my jacket on and my purse in hand.  I am usually tired by the time I walk in at 6:30 and just want to kick off my shoes, peel off my clothes, scrub the subway filth off of my hands and lay down on the sofa. But I wait anyway.  Hoping The Boy will run out from where ever he is to say hello and maybe even give me a kiss. 

Some days, he will.  On the days he greets me at the door, his reaction varies.  Sometimes I get the kiss.  Sometimes it's just, "Hi Mommy."  And sometimes, he runs to the door, jumps up and down frantically flapping his hands.   

Some days he just won't get up or look up.  And I have to go to him.

I have learned not to take it personally.  Though I'll admit, I would love to walk in the door one day and have The Boy run up to me, say Hey Mom and give me a kiss - without any prompting to do so.

I have accepted that it's just not what he does.  It's not that he doesn't love me - I know he does.  It just does not occur to him to do these things.  Just like it doesn't occur to The Boy to say hello to other children in the playground - even if they say hello first.

That's one of the components of autism - the social connection, the inability to interact and communicate appropriately with others.   The social connections that come so naturally for some parents and their children - is something that The Husband and I work on.  Every day.  Because it doesn't come naturally to The Boy.

The puzzle piece is the international symbol for autism because it's "a puzzling conditioning [that] isolates them from normal human contact and therefore they do not 'fit it.'"

But autism is not the puzzle I'm trying to put together.  The puzzle for me is trying to find new ways to connect with The Boy.  Connecting different pieces together to see what works.

And there are moments when I know the pieces I've put together, fit perfectly.  Moments when he spontaneously says, I love you.  Moments when he looks around the apartment and asks "Where did Daddy go?" Moments when he sneaks up on me and asks what I'm doing.  Or when The Boy grabs my hand and asks me to read a story.  And that's when I put down whatever I'm doing to read to him. 

For our family, reading is how we best connect.  There are times when I read the same book - 2, 3, 4 times in a row.  We take turns reading the lines.  I ask him to point to words or pictures.  I ask him to spell words.  When I'm reading to The Boy, he complies.  He listens.

But the moments I love most are those few seconds before he falls asleep.  After we've read our books.  When The Boy's body and mind have calmed down to the state of exhaustion and he's able to stay still.  When his eyes are closing and opening, reaching for my hand, not wanting me to leave.  And even though The Boy's five years old and should learn to go to sleep alone.  I will wait.  The Husband will wait.  Because we need those moments.  We need to know that The Boy wants to connect with us.  To be a part of us. 
           
How do you connect with your children?

Post inspired by a bi-weekly blog prompt called #HalbaTalk through Latina Bloggers Connect.

Post it Note Tuesday: Notes from the Notebook

Yesterday I came home after a long day of work.  I was hesitant in picking up The Boy's communication notebook, afraid of reading what the teacher had to write about The Boy's day.  While I was hoping The Boy had a good day, I honestly wasn't expecting it.   

Shame on me. 

As I read the note from The Boy's teacher, I couldn't help but tear up a little.  

This morning, I wrote back to the teacher.  

I think this is a major turning point for all of us.  I hope the teacher goes with it.  Somehow, I have a feeling she will.    

Wordless Wednesday: The Little Artist

The Boy LOVES to sing "Over the Rainbow" -
He drew this picture (independently!) with his SEIT 8/4/11

Another picture: Sun, Flower, Home (w/window), sky and grass. 
And writing his name!  (mostly independent but with prompting).  8/9/11



The Boy this morning.  It amazes how he's not really a 7 am morning person
but catch him at 3 am and he's ready to go. 

Three Words I Don't Often Hear

I don't hear the words "I love you" from The Boy very often.  I prompt him to say many things.  But those three words?  Never.  I don't want them to be forced, I don't want them to sound rote.  I want him to say it when he means it. 


Every night when putting him to bed, after kissing him goodnight, after reading him a story and kissing him goodnight again, I tell The Boy that I love him.  I usually repeat it.  Holding his face with both hands so that he can see my face and hopefully look me in the eye. Sometimes he repeats it.  Sometimes he doesn't.  Sometimes he gives me a kiss and asks me to "go away" because he wants "Daddy to read another story." Sometimes he skips the kiss. 


I can count the times since he's started really talking in the last two years that he's said "I love you" spontaneously. 


Last winter, at around 6 am on a weekday morning.  I was calling out sick for work because I had been up with him all night nursing his fever.  He was in our bed, barely awake, his cheeks flushed red.  I pressed a cold washcloth on his forehead.  I smiled at him.  At how calm and still he was.  A small part of me likes when he's sick.  Every mother likes to be needed.  And I savor the moments when The Boy is calm and still and lets me stroke his hair or sits beside me while I read a story.  He pushed the washcloth away.  His eyes were starting to close and right before he fell asleep, he whispered "I love you."


Three weeks ago, Sunday I was sitting (w-sitting actually) on The Boy's bed reading a story. The Boy dropped a toy behind the bed and wanted me to get it.  Major klutz that I am, scooted back (still in w-sitting position) to get up.  Instead I fell backward on the floor, flat on my backside.  I screamed out in pain and The Husband hurried in to help me up.  The Boy, seeing me pain, started to cry.  With real tears and I had to get up to console him and reassure him I was okay.  He put his arms around me, buried his wet face in my neck and sobbed "I love you."


This morning, The Boy and I are standing waiting for the school bus.  And he's having a hard time standing still.  I'm trying to make conversation.  But The Boy is busy watching the pidgeons.  He suddenly throws his arms around me and asks for a hug.  I gave him a squeeze.  And then he said, "I love you Mama."  So sweetly and so appropriately as if he just made the connection between the action and verbal expression.  Maybe he did.  I picked up The Boy (no easy task since he's about 52 lbs) and squeezed him again.  Kissed him on his cheeks about twenty times before putting him back down. 
As the bus pulled up, I kissed him again, handed him his bookbag and said goodbye.  He got on the bus without looking back and without saying goodbye. 


So many parents take those three words for granted.  Some parents, wrapped up in their own chaotic day to day, ignore these declarations of love.  Me? I have to cherish each and every time because I'll never know when, where or why I'll hear them next.           

Stepping Up. Melting Down.

I will never forget walking into the Harry H. Gordon (HHG) school for the first time - it was mid June, 2008.  I had no idea what to expect of a special needs program.  We had just received the diagnosis three weeks before touring HHG. 

The Boy on his first day of school

At the time we toured the school, The Boy had no language, he couldn't point a finger.  By that September he had 5: hi, bye, no, baby, go.  He could also say letter A - E.  And he could sign: give me, more, finish and play.  I remember putting him on the short yellow bus for the first time that September.  So scared.  So uncertain.  Still doubting the reality of the diagnosis.  I remember The Husband saying, "It's just to help him catch up.  He'll be in a regular school by kindergarten."     

It's three years later.  And now it's time for him to move on.  He has more than 5 words - hundreds, maybe thousands.  He knows all of his letters.  He doesn't need to sign anymore.  While his speech is not always spontaneous, he can get his needs met.  But he's still not ready for "regular" kindergarten.  It's okay, we've kind of let go of that.   

Last Friday was his "Stepping Up" Ceremony.  The program said the kids would sing two songs: Sesame Street's "Sing" and Laurie Berkner's "The Story of my Feelings."  Before leaving the house, I stuffed tissues in my bag, thinking I would cry. But there was no time for tears. I watched as The Boy refused to come into the auditorium and had to be coaxed in by his teacher.  As I walked back to my seat on the other side of the auditorium, I could hear him crying as his classmates sang.

After a good 5 minutes of listening to The Boy cry, I got up and walked around to where he was. He was sitting in his teacher's lap, fingers in each ear and tears streaming down his face. There are moments when it's very easy to forget about The Boy's diagnosis. This was not one of the moments.  In that moment, the diagnosis was painfully obvious. And instead of celebrating and enjoying the moment, all I wanted was to get the ceremony over with and get him out of there.

For the millionth time, I questioned my decision for September.  Could The Boy handle being in a typical school?  Even if it is a special class for kids on the spectrum?  If a Stepping Up ceremony could trigger a serious melt down - what will he be like during an assembly?  What will the first day of school be like?

I wore a pretty dress.  The Husband was dressed up.  So was The Boy.  My parents also attended.  I wanted to take a nice family picture.  But by the time the ceremony ended, I was mentally exhausted and my stomach in knots, thinking about September.  We rushed through a few pictures.  Because even though The Boy stopped crying, he was not in the best of moods.  And when he says "it's time to go," I know it's time to go.

We decided to go out for an early dinner and as soon as The Husband started driving, The Boy began to sing "The Story of my Feelings."  It's a good feeling, hearing your child sing.  It's something he's been doing a lot lately.  Singing to himself, hitting all the notes.  The ceremony wasn't what I had expected it to be, but in its own way, it ended exactly the way I wanted it to. 

The Boy's time at HHG isn't over just yet.  There's still the summer program.  Thank goodness. 

                          

 

         

"Appreciation is a Wonderful Thing."

It is Administrative Professionals Week and another Secretary's Day is upon us. As a secretary, I know it's our day to feel appreciated for all the grunt work we do throughout the year.  Yes, I'll bring you your paper.  Yes, I'll type that memo.  Sure, I'll google that thing you saw in a magazine last week.
But there is a whole population of Administrative Professionals that are completely overlooked:  the Mommatary.

As a mother of a child with Autism, I never knew how valuable my multi-tasking and organizational skills would be. When The Boy was first diagnosed, I wasn't prepared for the amount of paperwork that would be involved.  No one tells you that you will be spending a lot of time on the phone.  No one tells you about the never ending list of emails to send out.  The letters you'll write.  No one tells you about all the appointments you'll need to schedule.  The seminars you'll attend.  The amount of research that is required.  All the books you'll read, the documentaries you'll watch, the diets or methodologies you'll google.  All this, while juggling the parade of therapists coming in and out of your home. 

Having a good memory - will not cut it.  And you will get to the point where I am right now.  If I don't write it down - I'll forget.  I used to be all about Excel spreadsheets and lists.  And those are great.  But I've reverted to good ol pencil and paper.  I have a monthly planner where I write it all down.  Every meeting, therapy session and appointment, every call, email and reminder to follow up.  Every person I meet or website I've visited.  Everything gets written down in the big black book.  I have alarms on my phone to remind me to check the book.  And I keep several To Do lists.  Because let's face it - there is always something to do.

It's very easy to see why so many moms quit their day jobs or as I like to say, the job that pays in money rather than poop diapers and kisses.  Having a child with special needs goes beyond any stressful full-time job.  Moms naturally take on the brunt of responsibility.

Personally I have a hard time delegating and I am always over worked and exhausted.  Because in addition to keeping track of The Boy's schedule and the family schedule, I do the food shopping and cooking.  I take care of the laundry and the cleaning.  I make sure the bills are paid - sometimes they're even paid on time.  And while at work, I manage my bosses schedules. My day begins at 5:30 am every morning and it often ends at about 1:30 am.  That's usually about the time when I fall into a deep sleep and my mental to do list shuts off.  Heck, I need someone to manage my schedule! 

     

Yeah, yeah yeah - Mother's Day is coming but that kind of appreciation is not the same thing.  The Mommatary deserves a day off but never gets one.  She rarely gets a thank you or a thumbs up for a job well done.  Nor does she expect it.  But still - it's nice to hear.

So to all you Mommataries out there - Thank you & Great Job!  Treat yourself to something nice - a manicure, a bouquet of flowers, expensive chocolate, a new dress - it's well deserved.  And pencil it in, that way you'll be sure to remember.    

Appreciation is a wonderful thing.  It makes what is excellent in others belong to us as well.  ~Voltaire

   

Resisting Kisses

The Boy is a biter. 
A hitter. 
A licker. 
A pincher. 
A squeezer. 
A hand-flapper. 
A climber. 
A jumper.  
A negotiator. 
A manipulator.  
A MASTER manipulator.


I realize this just a few moments ago. When Joseph walks into The Boy's room and finds him climbing up the book shelf.  


"GET DOWN!" Joseph yells.      


Joseph isn't a yeller. He's good cop. I'm bad cop. The roles just come naturally.  So yelling - that's my job (the neighbors must love it). The Boy starts to cry. Not just cry.  SOB!  As if someone is cutting off his limbs with a butter knife. The tears are falling down his face, snot is running down his nose. His little chest is pumping up and down and he opens his mouth to talk but can't control his crying long enough to get a word out.  


The Boy wraps his arms around Joseph's legs. "Pick you up.  To hug you." (The Boy gets 'you' and 'me' confused)


So what does Joseph do? He picks The Boy up. I watch from the end of the hallway, shaking my head. Sucker.


The Boy puts both hands on Joseph's cheeks and kisses him. "Daddeee.  I woove you." 


I had to walk away. Even though I wanted to go up to The Boy and give him a kiss and a hug for spontaneously saying something so completely appropriate.  Resisting kisses. That's what the bad cop has to do.