Showing posts with label having children. Show all posts
Showing posts with label having children. Show all posts

Friday, August 16, 2013

The Question I Wish People Would Stop Asking

When my husband, Joseph, and I first moved in together, everyone asked when we would get married. When we got married, everyone asked when we would have a kid. Two years later, when I gave birth to our son Norrin, people asked when I was going to have another.
I hadn’t even been given the green light by my Ob/Gyn to get busy again. I was sleep deprived and my breasts were engorged and people were asking if I was ready to “try for a girl.”
The week that Norrin was diagnosed with autism my best friend had her baby shower. Norrin was two and half years old. Attending a baby shower, everyone wants to talk about babies and more babies. The diagnosis was so new. I was angry, heartbroken and confused.  And I wanted to scream each time someone asked, “My son has autism! And I don’t want any more kids.”
I struggled with whether or not to have another child. I knew Joseph wanted more children. My family kept saying we should have another. And every therapist that walked in and out of our home said a sibling would be the best therapy for Norrin. But autism was like this dark cloud hanging over me. I had fallen down this rabbit-hole and I was trying to figure out our new world.
After three years, I decided I was ready. And immediately I was pregnant. As I began to tell friends and family about my pregnancy, they all asked the same question: Are you scared this baby will have autism too?
For years people had asked when I was going to have another kid. Now that I was pregnant, everyone wanted to play on all of my fears. But during my second pregnancy, I was happy. Hopeful. Excited. And I told them that I wouldn’t worry until there was something to worry about. I wanted a baby.
And then during my 16th week appointment, my Ob/Gyn discovered my baby had died. I had a miscarriage and I didn’t even know.
Read the rest over at Babble. Click - HERE.

Tuesday, April 17, 2012

To Have or Have Not

The Boy fresh out the womb - 2006
This is one of my very favorite pictures - it's the first one of me and The Boy. Maybe it's the fact that I was coming off the drugs, but there's a look on my face that I've never seen in any other picture. Holding The Boy in my arms for the first time after feeling him grow inside over 39 weeks, was a defining moment.  I felt content, at peace, a feeling of love that I had never experienced.  Instant gratification to the umpteenth degree!   

On the day that The Boy was diagnosed,  the doctor asked if we were planning to have more children.  And while we weren't trying at the time, we knew we wanted more.  Until the doctor said, "You should consider genetic testing, if you want more children because you're more likely to have another child on the spectrum."  And it was two dreams shattering at once.

Everyone suggested we have another child.  My parents, family, friends, therapists - The Husband.  Everyone was asking when the 2nd one was coming.  Honestly, the thought of having another child with autism scared me - it still does. How will a second child impact The Boy?  What if I have a "typical" child who resents the responsibility of caring for The Boy?  I know parents do it every day with multiple children on the spectrum.  But could we do it? Not only emotionally or physically.  But financially. 

Then last year, at around this time, I decided I was ready. To take my chances.  Because I thought - what if, I was depriving The Boy of a potentially amazing sibling relationship.  I wanted another baby - autism or not.  I didn't care.  I knew in that moment, two and half years after The Boy's initial diagnosis that I had accepted autism.  The next month, we were pregnant.  And while I was nervous, I was so excited.  The baby's due date was to be on The Boy's birthday.  And I thought to myself - it's a sign.

But when I went in for my 16 week visit, my doctor couldn't hear the heartbeat.  And when we did a sonogram - we were able to see my baby whose heart had stopped.  My baby had died and I didn't even know. I'll spare you the details, but it's a loss I am still mourning.

There are days when I really want another baby. Especially when I see a pregnant woman or a newborn baby. And I am surrounded by pregnant women - at work, at Norrin's school, among our friends and family. I have days when our lives feel unbalanced and I can't help but think a baby would even us out.  Because I think The Boy would really be a great big brother. And then I have days that I'm content with The Boy because the thought of second loss would be devastating. And for a few minutes every month for the last six months, I am hopeful, only to be disappointed by the glaring pink line of negative pregnancy test. 

So while I absolutely love my first picture with The Boy, it makes me a little sad.  Because I wonder if I'll ever have a moment like that again.

(originally posted on April 14, 2011)  

Thursday, January 19, 2012

Working Mom Guilt

Maybe it was the postpartum.  Maybe it was the fact that I was on maternity leave during the cold months of winter.  Or maybe it was because I had no SAHM friends to keep me company.  But I couldn't wait to go back to work.  Lots of moms told me about how they cried on their first day leaving their child.   Not me.

I was so laid back.  Well, laid back for me.  (The Husband will say that I'm a tad neurotic, controlling and sometimes a worry wart.)

And then after the diagnosis, I was reading about the 'cold mother' theory and those first few months, I kept thinking of new reasons why autism was my fault.

Fast forward a few years...

I know autism isn't my fault.  But that doesn't mean the guilt is gone.  

So yesterday, I had my first breakdown of 2012.  I came home from work, sat on the sofa and just cried. (The Boy wasn't home from school yet.  I try not to cry in front of him, it's too upsetting for him.) And after I cried, I still didn't feel right. I hate that feeling, when my nerves get the better of me.  When my thoughts are all over the place and it's hard to focus.  And I have to keep reminding myself to breathe in and out slowly because my heart is racing and my hands are shaking.  Too much uncertainty, lots of built up frustration and other stuff going on that I can't discuss here.  Not now, anyway.

Tomorrow is The Boy's 6th birthday.  I'm going to send cupcakes and other party stuff into school.  But I can't be there.  I'd like to be.  I always have in the past.  But this year I can't.  I have to conserve my vacation days. (Last year, the majority of my vacation days were used on sick days, appointments, school interviews and IEP meetings. By the time December came, I had only 1 day left.) And since I'm taking Monday as a "vacation day" because we going through the evaluation process all over again, I can't take off Friday to go to The Boy's school. 

I missed so much at The Boy's last school.  It's impossible to take off for everything, even though I'd love to be there for everything.   And even this year,  I've missed a lot.  Like PTA meetings, because they're in the mornings and that requires me taking a half day.  The Boy's school trip to the NY Botanical Garden.   

It sucks when you want to be there and can't.  I know I can't quit my job.  And I know that lots of other moms are dealing with this same kind of guilt.  And I know that The Boy doesn't feel slighted because I'm not there.  And (most days) I know I'm doing the best that I can.  But it still sucks just the same.

(And if this post is all over the place, I apologize.  I'm still trying to breathe slowly.)

Thursday, December 22, 2011

Gentle Christmas - a "Just a LiL Blog" Post

photo courtesy of
"Gentle Christmas" is part of the Through the Looking Glass series (guest post)

I discovered Jim's blog,  "Just a Lil Blog," a few months ago and from the first post I read - I was hooked.  Jim has made me laugh and cry, his voice is honest and poignant. 

His blog header says it all: The true life adventures of a little girl with autism, and her struggles raising her two parents with only a big sister to help her.  


Lily sees “Rockin’ Santa” on the hearth the morning after we decorated the Family Room.  She wanders over to pick him up, saying, “Santa Claus”, clearly. 
We smile and I ask her, “Do you want me to turn him on?”
Maybe we’ve learned our lesson from all of Lily’s adventures with other animatronic decorations.  She’ll be fascinated with him, no, obsessed with him, for a day or two before losing interest.  I thumb the switch on and adjust the potentiometer dial to a higher volume.  “Rockin’ Around the Christmas Tree,” starts to play.  It’s been twelve months since I’ve heard it.  It doesn’t make me cringe yet.  It will.  Santa begins to sway to the music, cuttin’ a rug to Brenda Lee’s musical stylings.  Lily gets excited and carries Santa too far from the power strip.  The chord pulls taut then the lead pops out from the back of Santa’s boot where it trails across the carpet to the plug-in and he goes silent, his Achilles heel pierced by an unseen arrow, or unpierced I suppose.  Lily stumbles a bit at the unexpected release and looks around in slight confusion.
“You have to stand still with Santa.  Be gentle,” we admonish her, carrying Santa (and her) back to the hearth and plugging him back in.  The music starts over.  This time I do cringe a little.  This process repeats itself a few times before the lesson sinks in and Lily contents herself with standing or sitting next to the power strip with Santa, or as far as he’ll reach without pulling from the socket, a trip wire of Christmas spirit waiting to snare the unwary (her big sister, Emma, most likely).

photo courtesy of
The Christmas tree is up and decorated.  Burgundy velvet ribbons weave in and out of pine boughs.  Limbs drip with sparkling glass and shining brass ornaments, reflecting and refracting the glint from hundreds of white lights.  Lily investigates it periodically.  Once she leans in very close.  The ‘needles’ (it’s an artificial tree) are beaded with ‘ice’.  She opens her mouth widely and says, “I bite tree”.  I watch her from my chair, wondering where this is headed, but she leaves after a few minutes, the tree unbitten.  This threat seems to have been more to see whether I’d let her bite the tree than for any gratification tree biting might have offered her.
Later she stands next to the tree watching me intently, taking blind swipes at it without taking her eyes from mine, an attention getting device of some kind, though my attention is fixed firmly on her.
“Be gentle with the tree, Lily,” I tell her, for the tenth time.  She hits it this time.  The bows sway slightly and a faint jingle of ornaments shifting and swaying can be heard.
“If you hit the tree again, Lily, you’re going to have to sit in timeout.”  She hits the tree again.  She sits in timeout. 
She leaves the tree alone then, at least for a while.

An advent calendar sits in the hallway.  It’s a big one, not one of the paper cut-out kinds with the flaps.  It is shaped like a house with 24 doors.  Behind each numbered door is candy, or a tiny ornament.  When the doors open “Santa Claus is coming to Town” chimes, and a shuttered window like a cuckoo clock door opens revealing a child in winter clothes opening a Christmas stocking full of presents.  Below the door, a scene animates; little townsfolk skate in circles around a tiny town that lights.
Lily ignores it, which is a blessing.  Her sister, Emma, opens the doors daily for them both.  Lily doesn’t really eat the candy behind the door, and the ornaments for Emma’s tiny tree are too fragile to be entrusted to her tender care, so really it’s just for Emma.  I dread the day she decides it’s no longer beneath her notice.

photo courtesy of
On the main floor a large posterboard cutout of Santa Claus’ head smiles benignly from the powder room door.  It’s a remnant from some past Christmas party, and Emma loves it, so we keep it, tacking it to the powder room door. 
Lily walks past the door and pulls it off the tack.  The tack clatters to the floor, skittering across the tile before scribing slow rocking quarter circles across the tile and coming to rest.  I scramble to pick it up before she steps on it in her stocking feet. 
“Lily, be gentle with Santa.  Don’t pull,” I tell her.  I tack the fallen head back onto the powder room door and guide Lily back into the ‘safer’ environs of the Family Room. 

Santa sits ensconced in velvet.  A human-sized elf stands to his right with a clipboard.  We have a number so that we don’t have to wait in line for our turn.  Lily is allowed to play at the mall playground or investigate the Christmas train while we kill time.  All the children waiting to see Santa are like Lily.  And all of the children waiting in line are different than Lily.  But you know what I mean.  When it is Lily’s turn the elf standing guard over Santa’s person hands us a form to fill out.  Both of us are there so one of use rides herd over Lily while the other fills out the form.  It occurs to me that if I were a single parent, I’d have to fill out the form at the same time as I was watching Lily.  I shake my head that an event designed to minimize stress for autistic kids and their parents could triumph so magnificently overall but stumble at the finish line over such an obvious issue.  I again thank god that I’m not a single parent and that my wife is always there to support me.
Emma asks if we think people will think she’s autistic if she sits on Santa’s lap with Lily.  Part of me feels sad at this.  I ask her if it matters to her whether people think she’s autistic or not.  I think a part of her feels ashamed at having asked the question, as if asking the question means that on some level she’s not proud of Lily.  She thinks for a moment, then shakes her head no.  This brightens me, and appears to brighten her as well.  We ask her if she still wants to sit on Santa’s lap.  She nods and says, “For Lily.” 
When the paper work is filled out, Lily sits on Santa’s lap.  She occupies his right knee, while Emma sits atop his left.  She is calmer when Emma is with her.  Nevertheless a stranger with a white beard is holding her on his lap.  She suffers this curiously for 5 – 10 seconds.  She doesn’t yank his beard, but seems to find brief fascination in the tuft of fur dangling from Santa’s hat.  We furiously thumb shutter buttons and pray for quick focus on digital cameras.  She squirms a bit and escapes to a safe distance to watch as Emma relays both of their Christmas wishes.  Lily’s are guesses.  She never really asks for anything except McDonald’s.  Santa will definitely be getting her a gift card there, if he wants any cookies this year.

When we visit our families’ houses there are lots of decorations everywhere.  It’s beautiful, but dangerous for Lily.  She wanders from “no” to “no”, generally wreaking havoc on everyone’s’ houses without really understanding what all the hub-bub is about.  The family is gathered together.  There are more people than usual in each house, more “nos”, more music and laughter and expectations. 
We try to keep her entertained and minimize the destruction and still visit with the family, but it’s stressful.  Every holiday visit is stressful.

Lily knows who Santa is without really registering what he’s supposed to represent.  Lily knows how to say “Merry Christmas” (when prompted) without really understanding what that represents either.  We put the gifts in front of Lily on Christmas morning, and sometimes she rips the wrapping paper, and sometimes she ignores it completely.  She doesn’t look forward to Christmas, or get excited Christmas Eve for the jolly fat man’s impending housebreaking.  Christmas for Lily has all the stress it has for me, but none of the magical payoff.
I’m doing my best to try to see the world from Lily’s point of view.  I feel like I’ll be better equipped to help her if I try to see things the way she does.  I feel like I’ll better understand what she needs and wants.
Christmas is like magic to me.  But Christmas is like magical holiday torture to Lily.  Lily’s sister, Emma, loves it.  We all want Lily to love it too.  But she doesn’t.   And that’s okay.  We’ll still fight the good fight.  We’ll still try to make it special for her without removing those things that also make it special for her sister.
Some things we can’t (or won’t) change.  The decorations will still go up.  The music will still play.  We’ll still visit family.  And Santa will still be the jolly prowler, sneaking into our home when we sleep to distribute presents.  Even once Emma “knows”, that probably won’t change.
The biggest change and gift we can give Lily for Christmas is to adapt our expectations of what she’ll get out of the experience to something more ‘reasonable’ given what we know about what Lily tolerates/likes/loves.  She still loves the music.  She’ll get presents she’ll enjoy (probably).  But Christmas is NOT magic for her.  Maybe it will be someday, but for now it’s stress layered on top of stress.  It’s noise and crowds and intriguing fragile ornaments and decorations that invite, no demand, inspection but that cannot be touched.  Our expectations for Lily need to be filtered through Lily’s point of view. 
We need to understand that Lily will want to hear “Rockin’ Around the Christmas Tree” dozens and dozens of times.  We need to understand and be patient with her when she investigates the tree, or pulls Santa off the door, or opens the advent calendar out of order, or breaks Christmas bulbs at her grandparents’ houses.
Lily is a happy little girl.  And it seems ironic that we’d take that happy little girl and make her miserable in an attempt to get her Christmas experience to line up with our expectations of what her Christmas experience should be. 
Lily will have a merry Christmas, though Christmas day might not be any merrier than any other day of the week; December may be no jollier than any other month of the year.  But if we’re patient with her, and try to see things a little bit through her big brown eyes.  Maybe it won’t have to be less merry, less jolly.  And relaxing our own expectations might make our holidays a little happier too.
It’s not reasonable to take a child whose entire life and comfort is bound so rigidly to structure and routine, insert ten times the number of restrictions and expectations for one month, and expect perfect compliance, or even anything approaching perfect compliance. 
So to the extent that the holiday stresses will allow us to relax, we’ll relax around Lily during the holidays, and if not ignore her occasional forays into forbidden realms outright, at least understand them and be patient and understanding with them, remembering to gently tell her to “be gentle.”

Tuesday, November 15, 2011

Love Accidently

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."

Friday, September 30, 2011

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.

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 youMoments 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.

HablaTalk Blog Prompts

Tuesday, September 27, 2011

I Can't Go Back To Yesterday

"I can't go back to yesterday because I was a different person then."  
~ Lewis Carroll

Caterpillar: Who... are... you? 
Alice: I'm afraid I can't explain myself, you see, because I'm not myself, you know. 
Caterpillar: I do not know.
Alice: I can't put it any more clearly, sir, because it isn't clear to me. 

Earlier this month, I celebrated my 36th birthday and today is my 1 year blogoversary.  And so I'm taking today to indulge in self-reflection.  (Flashbacks via blog post.)

It's New Year's Eve and I'm home with my family.  We're watching Dick Clark.  I am 14 years old.  I am still under my mother's thumb.  I have not kissed a boy.  I weigh less than 115 lbs and an "A" cup.  I wear glasses, am certain the acne across my forehead is a secret message in braille and growing out a bad haircut - the trifecta of teen angst.    

There is talk about the year 2000.  And I quickly do the math in my head.  In the year 2000, I will turn 25 years old.  And in my young mind, 25 seems old.  I imagine what I would look like.  What my life would be like.  I have an vivid imagination so I conjure up this fabulous life.  My acne has cleared.  I have long perfectly straight hair.  I am married to Johnny Depp.    

It's New Year's Eve and I'm at Sound Factory.  Working as the cashier. (It's one of my jobs.) But I don't mind, I'm working with my best friend.  And we sip free cheap champagne.    Throughout the night and into the early hours of the morning, clubgoers shove their sweaty crumpled dollar bills under the bullet proof window.  

I have boyshort hair, jet black and slicked back.  Lacquer red glasses. Twenty five is 9 months away.  And I haven't met Johnny Depp.  I'm a receptionist, a part-time college student and on the weekends I work at various clubs throughout the city, as cashier as coatcheck girl. The weekends I'm not working.  I am out all night.  I spend my days sleeping.  

It is not the life I imagined at 14.    

It's New Years Eve at 10 pm, I'm fighting my sleep.  I am 30 years old and almost 3 years married.  Working 1 job and still a part-time college student.  I am 33 weeks pregnant.  I know I'm having a boy and we have a name picked out.  His crib is set up, his clothes washed, folded and waiting for him.  We are waiting for him. 

I have read books on motherhood, swaddling and sleep.  I researched bottles and pampers.  I am nervous and excited.  Scared.  Swollen.  I am uncertain of what kind of mother I will be.  Will I be good at?  Will I like it?  Will I change?  

It is still not the life I imagined at 14.  Or the life I imagined at 25.       

2011 (Today)
I have spent many years wondering who I am.  Wandering aimlessly from place to place.  Imagining the kind of life I would have, of the kind of person I would become.  

I never imagined pursuing a masters degree.  I never imagined being a writer.  Or a mother to child with autism.  I never imagined being a voice for someone else.  I never imagined wanting to make a difference.  Or having a cause to believe in and fight for.  

I am all of those things.      

This is one instance where I don't feel like Alice.  I know exactly who I am.  And I know the kind of person I want to be.  I don't have to spend another New Year's wondering or waiting for something to happen.   

It is not the life I ever imagined for myself.  It's so much more.  

Post inspired by a Kick in the Blog prompt, Who are You?

Friday, August 19, 2011

Too Old to Hang on a Thursday Night

I used to be cool (Not really).  But I used to be able to go out, party all night, come home, shower, change and go to work. (Really) There wasn't a day of the week when I wouldn't go out. 

These days?  No - not so much.

But last night The Husband & I did something we haven't done in a long time.  I mean, it's been so long - I can't remember the last time we did it.  Or if we ever have.
We. Went. Out!   

I know - on a Thursday!  To see a really cool band - Si*Se at the Hiro Ballroom.  We left The Boy with his Nino (godfather) and Uncle Johnny.  Another thing we've never done before.  (Remember my post from earlier in the week?  If I were really Wonder Woman I'd have a much smaller waist.  Help is the one 4-letter word, I seldom use.) 

Anyway, we had a great time out with friends - it was much needed for The Husband and I.  But standing there in the middle of the ballroom floor waiting for Si*Se to play, crowded in the dark, having strangers spill their drinks on my feet (eeeww), I realized - I'm too old for Thursday night shenanigans. 

Here's how I know

Heels were not an option.  As I was getting dressed, I put on a pair of wedges, I haven't worn all summer.  After taking ten steps in the apartment, I kicked them off and put on my flats.  Sexy?  Not really.  Sensible? OH YES! 

I got my hand stamped.  And after it was stamped, I said "OMG, it's been so long since I got my hand stamped!" 

We got there at 8pm because the tickets said the show starts at 8:30. (Literal thinking rubbing off on me much?)

I actually expected Si*Se to start at 8:30.

At 9:30, I was annoyed to still be listening to the opening act. Don't get me wrong, she was great too.  But the whole time I'm looking at/playing with my phone - a social media gal like myself has to stay connected.  (And while I was playing with my phone,  I thought about the times when I went out and was like "beep me when you get there.")

At 9:40 I was really happy that I wore my flats.  But secretly jealous that my girlfriend slipped into a pair of Fit Flops.   

At 10 pm, I whispered to The Husband, "what time do you want to leave?"  Just as Si*Se started performing.  As much as I enjoyed their music,  I kept thinking about picking up The Boy.  Taking him home and our 6 am wake up time.  

By my third drink, I was ready to fall asleep.  

By 10:45, we left even though the band played on. 

After getting home close to midnight and waking up at 6 am, I realize now (while I'm trying to stay awake), that if we ever go out again on a Thursday night - I will NEED to take Friday as a vacation day.


Monday, August 15, 2011

Some Things Are Worth The Risk

Early this morning, I received a call.  

Immediately I recognized the woman's voice.  It was Gen, The Boy's Early Intervention ABA therapist.  I had just woken up and didn't have a chance to turn on the television or computer. 

I had been told this before, so for me it was no big deal.  After The Husband and I got the diagnosis, the doctor followed with, "If you're thinking of having more children, you should consider getting genetically tested as the chances of having a child on the spectrum..." Blah blah blah...

Truth be told, after the diagnosis, I told The Husband I didn't want any more children.  (Even the idea of intimacy frightened me.)  I knew The Husband wanted more children.  "If you want more kids, you'll have to have them with someone else.  I'll understand," were my exact words.  At the time, I was so set in my decision that I was willing to give up my husband. 

I don't feel that way any more, I think it was all part of the (for lack of a better word) grieving process.  

Once I decided I wanted another child, that was the moment I knew - I accepted autism.   

And when we became pregnant for the second time, I was elated.  Even though everyone kept asking me if  I was "scared."  I had taken a positive approach during those brief weeks of my 2nd pregnancy.  I told people that I wouldn't worry until there was something to worry about.  And if Child #2 had autism, at least I would know what to look for and what to do and where to go for help. 

If I were to become pregnant again, it is not autism I fear.

I fear a second loss of life.  That is the only risk. 

I fear The Boy one day asking me - why he doesn't have a brother or sister.  If we try and do not succeed, that's one thing.  But if we do not try  - out of fear of having another child with autism.  How could I look The Boy in the eye?

The Boy is our only child, I do not know what it's like to have a child without autism.  No, I don't want to cure him.  I love him.  And maybe because of autism, I may love and appreciate him even more.  Autism only adds to his personality, it doesn't diminish it.  

So if we have another child on the spectrum, then so be it.  I'm prepared.  I just want another child.  I want The Boy to to have a sibling, companion.  He'd be a great big brother and I want nothing more than to balance out our little family.   

The joy and privilege of being a parent far outweighs any risk.

Friday, June 17, 2011

"You don't raise heroes, you raise sons."

You don't raise heroes, you raise sons.  And if you treat them like sons, they'll turn out to be heroes, even if it's just in your own eyes.  ~ Walter M. Schirra, Sr.

To My Papa

In all the things I try to do
I want to do them just like you
I'm watching every move you make
And trying to take each step you take
Although right now I'm sort of small
When I'm with you I feel ten feet tall
Like you, I want to be cool and smart
Cause I love you Papa with all my heart

Father's Day, 2006

I gave this picture to The Husband the Father's Day after we received The Boy's diagnosis.  The words "Your son has autism" had been difficult for The Husband to hear.     

An autism diagnosis is usually harder for fathers.  Just as mothers have expectations of their children, fathers have expectations of their sons.  Especially if that father is into sports.  They imagine their time will be spent out in the parks tossing a ball around or going to sporting events.  Dreams of their son being drafted by their favorite team.  Fathers want to live vicariously through their sons.  And when a father hears autism, these dreams and expectations are taken away.  And I imagine they wonder where they will fit in their son's life.    

I often think about how my father or my father-in-law would have handled an autism diagnosis.  I doubt either would have left (as so many men often do).  But I doubt either of them would be as hands on as The Husband.  It's not to say that they were bad fathers, it was just a different generation.  The expectations of being a father was simply having a job and being a good provider.  No one expected fathers to show up to schools, to talk to teachers, to go to appointments, to spend quality time with their children.    

For me, this gift represented the importance of The Husband's role in our lives.  I wanted him to know that The Boy's diagnosis didn't change the way they felt about each other.  The way that The Boy smiles when he sees his father walk into a room.  I wanted The Husband to know: Autism doesn't mean a son needs his father less.  It means a son needs his father even more.

I am always amazed by The Husband's patience when dealing with The Boy.  I watch as The Husband tries to show The Boy how to toss a football, ride a big wheel or balance on his scooter.  And I fall in love every evening, when I watch The Husband climb into The Boy's bed to read a story or sing a song. 

But I think my favorite moments are when The Boy jumps up on the sofa while The Husband is watching baseball or football.  For a few minutes, The Boy will watch and The Husband will put his arm around his son and try to explain the game.  Until of course The Boy gets bored and moves on to something else.  But I know to The Husband, those few minutes are all he needs. 

He is raising a son and his parenting style isn't atypical or otherwise.  Because I know that the diagnosis, hasn't changed the kind of father The Husband would have been, but it's made him a better man than I could have ever hoped for.

Sunday, June 12, 2011

Managing Screen Time. Easier Said Than Done.

My name is Lisa and I am a Screen Time Junkie.  I  love television: documentaries, trashy reality, sitcoms, dramadies, comedies, soaps.  I watch the Home & Garden channel like nobody's business!  And I don't have a home or a garden. 

And oh how I love watching movies! I could easily spend an entire day on my sofa, committing myself to movie marathons - like Star Wars or Twilight.  The Husband is a video game playing fool - we have every system: Play station, Wii, Xbox, the Kinnect.  And we are all about our computers, laptops and iPad. 

So we were never those parents who said we'll never allow our child to watch TV or  set a time limit on TV.  We're bad.  Bad bad parents.

Then there are those parents who so smugly say "we don't allow our children to watch television."  But then these kids are allowed to watch dvds like Dora or the Backyardigans.  Those parents kind of make me laugh, because seriously - who the heck are you trying to kid with your holier than TV thou attitudes?  Screen time is screen time.        

Anyway - we've all been there.  In those meetings answering questions about our kids.  The one I absolutely dread is: How much screen time do you allow your child?  (Screen time is essentially any time you allow your child is in front of a screen: computer, tv, iPad - even Leapster.)  And I'm always honest.  It's about 1 - 2 hours a day and on the weekends, probably more. (Way more, depending on the weekend plans and weather.)  And then I hear: you should try to limit it or manage it.

Easier said than done.   

Monday to Friday - The Boy has a full schedule.  The bus picks him up at 7:19 am.  From 8:30 am to 2 pm he's in school.  He's home by 3:15, then he eats and rests for a bit.  And then from 4:30 to 7 pm, he has therapy (either SEIT or Sensory Gym).  That's a pretty long day for a 5 year old.  So if after all is said and done, he watches an hour of television - who is it going to hurt?  Because there is dinner to cook and dishes to wash.  And as much as I'd love to spend my every second working with The Boy.  I know it's not possible and I don't want it to be.  Sometimes I just want to be his mom, not a therapist in disguise.  Sometimes I need it to just keep him company, so that I can get stuff done.  Sometimes I want to sit with him and watch cartoons. 

But there are teachable moments when watching TV with your child.  Ask him/her questions.  Start a conversation about what you're watching.  While watching TV, I always ask The Boy how a character is feeling or what happened?  If there's singing, I ask The Boy to sing along or dance.  The Boy almost always complies.   

As for the computer and iPad - especially the iPad - they are the best things ever for The Boy.  And like TV, it's something he is willing to work for.  And he enjoys it.  He works on his hand/eye coordination while using the iPad. He engages us in conversation while using it.  He makes requests.  He makes eye contact and uses full sentences - and every word is clear enough that even a stranger could understand.

Why do we want to manage that?  We want to encourage it!     
Ultimately, we give The Boy balance.  Yes, we let him watch TV and use the iPad and Leapster.  We really have no set clear cut boundaries.  (Other than making sure, anything he watches is age appropriate - obviously.)  But we read to him - every night.  And we talk and ask him questions about his day.  Sometimes he tells me.  And we sit and do puzzles and play turn taking games.  And we engage him in pretend play.  And when we play, we use scripted speech memorized from television and then we try to make it more spontaneous.

And even on those rare Saturday afternoons when I'm catching up on laundry and cleaning and cooking, when The Boy watches 3 to 4 hours of straight television.  I don't feel guilty.  Because I also know he's not sitting still the whole time completely absorbed in what he's watching.  He's running back and forth and playing with toys and reading books - often using the TV as background noise.  And because I know there are days when he doesn't watch any television at all.  And I'm reasonable enough to know that an afternoon of hardcore TV watching isn't going to be his downfall.
The American Academy of Pediatrics (AAP) recommends that kids under 2 years old not watch any TV and that those older than 2 watch no more than 1 to 2 hours a day of quality programming.  For more on television and children's health, please refer to the article on how TV affects your child and article (FAQs) on children and media.

Thursday, May 5, 2011

My Mother as Abuela

I am always amazed when I watch my mother kiss my son goodbye.  Often she will not leave my apartment without several hugs and kisses from her only grandson.  My mother will give him a big squeeze and kiss him repeatedly on the cheek, “Bye my little pussycat.”  And I roll my eyes because (a) she refers to my five year old son as a “little pussycat” and (b) she never ever called me anything else other than Lisa – unless esa Lisa counts.  And when I witness the exchange I wonder: who is this overtly affectionate woman who claims to be mother?  This is not the woman that raised me.

The woman that raised me is one of the matriarchs that everyone fears respects.  Born in Cidra, Puerto Rico my mother's family moved to New York City when she was nine years old.  My mother is the kind of woman many would describe as “old school,” however her true power rests on the values of two worlds: old and new, Cidra and New York.  A clash of two cultures – whether she realizes it or not. 

My mother is a big believer in tough love and teaching lessons.  She was quick with a slipper and quicker with her hands.  She moved so swiftly, you didn’t realize you were given a cocotazo, until you felt your scalp stinging. Needless to say - I got the slipper often.  As for her lessons, the older I get, the more I can appreciate what she tried to instill.       

We spent most of my teenage years arguing, clashing the way mothers and daughters often do.  When I was about sixteen years old, I yelled, “When I have kids, I’ll never bring them to your house.”  To which my mother replied, “I want that in writing.”  So I wrote down my words on the back of a bank deposit slip, signed and dated as if it were a legal document. 

A few years ago, while having dinner at her house – my mother brought out the note to show my husband.  We all laughed because my son (who was two at the time) had just spent the night.  And now I laugh because every afternoon my mother takes the train from Queens to the Bronx so that she can wait for her grandson to come home from school.  She stays until me or my husband come home from work.  She sits in on his SEIT therapy sessions, makes dinner, washes dishes - even manages to do laundry.  And when I try to pay her - she shoves my hand away. 

I often come home and find my mother reading to my son, in a quiet patient voice; a voice that I don’t recall hearing as a child.  There is a small part of me that feels jealous, almost slighted because my mother never read to me.  On days when my son’s therapist cancels a session, I’ll come home and find my mother and son sitting at the table in his room and they are working on fine motor skills like stringing beads or rolling out play dough.  I hear her singing to him and her voice is always playful and sweet.  Don’t get me wrong – she scolds him, but even when she does it’s not the same as when she scolded me. 

I love watching my mother and son together – the bond they have is special.  And I’m grateful that my mother kept the note I wrote so many years ago.  It makes me realize how wrong I was and how lucky I am to have a mother like her.  And that my son benefits from having her as his Abuela. 

I learned my lesson - nearly 20 years later.  Maybe my mother is just as patient with me.