#YouMightBeAnAutismParentIf

you've been on twitter lately and following these tweets - #youmightbeanautismparentif. 

If you haven't - you should.  It's been steadily growing.  The idea for the twitter party was started by Many Hats Mommy and the hashtag was created by @RaisingASDKids.   

Honestly up until a few days ago I wasn't one for twitter.  I didn't really get it, couldn't keep up - I didn't really understand the point of the hashtag.  But since I've been participating in the #youmightbeanautismparentif twitter party, I've been a tweet freak.  I think I've come out of the Twitter closet and now ready to embrace @LaliQuin (my twitter name). 

I'm throwing out hashtags and retweeting and replying to tweets. (Ok, still working on my response time.) 

And when @HollyRod4kids retweeted ME.  I yelled out - OMG!  Because that's the kind of Twitter dork I am. 

The absolute best part of this ongoing twitter party is that I've connected with so many people, I may not have met otherwise.  I'm laughing and crying and nodding my head because the things other parents are writing I totally get.  Because it's always nice to know I'm not alone in my thoughts. 

Here are just a few of my favorites:  

@diaryofamom #youmightbeanautismparentif you find yourself celebrating and heartbroken - at the same time and for the exact same reason.

@jillsmo  #youmightbeanautismparentif you have to live forever. No, I'm serious. This isn't optional.

@autismfather  #youmightbeanautismparentif one moment, you feel completely alone & the next, you're a part of a large, passionate & supportive community.

@loumelgarejo #youmightbeanautismparentif You see a child breaking down in public and don't pass judgment on the child... or the parents.

@LLA_Princess #youmightbeanautismparentif you always talk like you are in a social story....."And that's ok"

@Birdakamaude #youmightbeanautismparentif you've read enough books on #autism that you could practically be a doctor yourself

 

@trydefyinggrav #YouMightBeAnAutismParentIf you wanted to write your own #Parenting book because the ones you have are useless in your world.

@jodigomes #youmightbeanautismparentif youve accepted that NORMAL in ur house is exactly opposite of "typical" in pediatricians office #Autism

 

@RaisingASDKids #youmightbeanautismparentif once child knows no Santa u watch him so he doesn't tell every small child bc "they need to know the truth too"

@manyhatsmommyMI And the companion guilt: #Youmightbeanautismparentif you feel guilty that your child says "I love you" when so many others don't. #autism

@thecoffeeklatch If you want to follow the most inspirational thread on Twitter - get a kleenex and be inspired #youmightbeanautismparentif #TCK.


And here are a few of mine -
 LaliQuin AutismWonderland

#youmightbeanautismparentif you look at pictures pre-diagnosis and wonder "Why didn't I see it?" #guilt

 

#YouMightBeAnAutismParentif you have a hard time going to sleep at a reasonable hour. #neverlearn #needmoresleep

 

#youmightbeanautismparentif you've slipped on, stepped on, rolled over on (yes, in bed) Legos #OUCH

 

#youmightbeanautismparentif YOU know in the grand scheme of things #autism isn't a big deal, but hate when others say, "it's no big deal"

 

 

#youmightbeanautismparentif potty training is taking years not weeks. And let's not discuss night-time potty training...

 

#youmightbeanautismparentif hate hearing "Oh but that's all kids" Because no...it's really not.

 

 

#youmightbeanautismparentif Goals are the priority

Go ahead join the #YouMightBeAnAutismParentIf conversation on twitter! 

#youmightbeanautismparentif _____________________.

"Thanksgiving is more than eating..."

"...Thanksgiving is more than eating, Chuck...We should just be thankful for being together."  

~ Marcie, A Charlie Brown Thanksgiving

Tomorrow, I'm going on strike. I'm not cooking.  I cook 364 other days of the year, I'm entitled to a break. Okay, that's a lie - I don't cook 364 other days of the year.  But I do know that I've spent the last 8 years slaving away in the kitchen for days before, during and after over a meal I don't even like.  I don't like turkey. Or sweet potatoes or gravey.  Hell, I just started to eat pumpkin pie last year.  

Tomorrow, we will take a trip into the City and watch the parade (fingers crossed that The Boy likes it) and order Chinese or Mexican.    

For me, Thanksgiving has never really been about the meal - it's about the feeling of togetherness - whether it's with family, friends or the friends that have replaced family.  Thanksgiving is about sharing. Talking. Laughing with the ones we love.  But most of all - looking back and reflecting on all that we are thankful for.     

Last Thanksgiving I created a Top 10 List of the things I am most thankful for.  My list is pretty much the same - with a few tweaks. 

10. My job. It may not be ideal, but it pays the bills.
  9. My cozy little apartment - it's home.  
  8. My writing - it's therapeutic
  7. The network of support I've created through my writing.  (That's YOU - reading this!)
  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 Mother: I'm lost without her & The Boy is lucky to have her as his Abuela.

  3. The Husband: A phenomenal partner & father.  He believes in me when I cannot.

  2. The Boy: (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 and starting to ride his little scooter
• He's day time potty trained - woohoooooooooo 
• 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.  


What are YOU thankful for? 

The Moment I Forgot About Autism

It happened in Target of all places, on a Sunday afternoon.  The husband had wandered off while I pushed The Boy around in the cart; though at four years old, The Boy was well over the weight limit.  It was easier to shop, if he was contained. 

Through the corner of my eye, I saw a woman. Unlike my frantic sloppy ponytail and my smear of cherry chapstick, the woman had time to fix herself before facing the world.  Her hair was neatly combed back in a ponytail; she wore bright coral lipstick, boot cut jeans and brown boots with kitten heels. Her nails were filed square and painted ivory. My nails were bare and bitten down.

I realized she was a mother.  She had one manicured hand on the handle of the shopping cart.  Her son lagged behind.  Every so often, her son wandered off.  When the mother called out a name, her son instantly reappeared.  Her boy was probably a year older than mine. 

I could never shop like that.  High heels were impractical when out with The Boy.  I never knew when I needed to run.  And there was no letting go of his hand.  If I let go, he’d wander away; the warmth of my hand would go unnoticed.  If I called out his name, he would ignore me, stuck in stim.  If he ran off, The Boy would never tell a stranger his name.  Not because he didn’t know it or couldn’t say it, the question just needed to be asked several times before The Boy provided a response; if he provided a response.  And it was unlikely that The Boy would look a stranger in the eye.  A stranger would give up.  And The Boy lacked the cognitive ability to say that he needed me or missed me.  The Boy was a kidnapper’s dream. No, I could never let go.

I wondered what that mother’s life was like; I wondered about the dynamic of her relationship with her son.  I was certain that she never had a team of therapists in and out of her house.  When she asked her child a question, he looked her in the eye and answered back.  And when she kissed that child goodnight, he would automatically say the three words every mother longs to hear, without any prompting and with genuine feeling.  When she let go of his hand, she knew he would return. 

Her boy wanted to start writing his Christmas list.  He wanted a new scooter and some video games.  The mother smiled and she said something that I did not hear.  I stopped listening.  It was hard to listen to their exchange and not feel envious.

We approached the baby section and The Boy attempted to stand, reaching out for the infant toys, his hands flapped with both excitement and frustration, bird-like sounds coming from his mouth.  “Sit down. Use your words.”  I said in a firm tone of voice used by therapists. 

The Boy had words, lots of words actually – hundreds, maybe thousands.  But he used them sparingly and hardly spontaneously.  Most of his speech was scripted, memorized from books or cartoons. 

“Mommy.  I want the toys please,” he asked. 

The Boy’s words were stilted, his high-pitched voice void of emotion.  With each syllable his head bobbed like a marionette. 

“Fix it.”  I said. 

The Boy repeated the request in his natural voice.  Though his tone was deeper, it still lacked affect.  Words can be taught, emotional tone is much harder. 

We moved slowly through the aisles.  The store was crowed with holiday shoppers; the toy shelves were filled to capacity, not an item of out of stock.  Women walked with circulars in their hands, looking for sales; searching for price check machines. 

The glitter and sparkle of the Christmas decorations reminded me that I needed to buy a tree and pull the decorations from storage.  

“Oh my!  Look at all these decorations,” The Boy said in his high-pitched voice.  His words were crisp and clear.  His facial expression was appropriate: happy and wide-eyed.  He pointed.  And I was surprised that he knew the word “decorations.” 

I pushed the cart closer to the decorations.  There were Christmas trees and wreaths, stockings and snowmen, candy canes and bright bulbs.  I didn’t care if he flapped; he was excited. 

“What are the decorations for?” I asked.

The Boy looked me right in the eye. “For Christmas! C is for Christmas.”

The Boy kicked his legs against the cart.  He smiled the smile that I loved; it belonged to a four year old boy who was neither typical nor atypical; with dimples in each cheek, his eyes squinted and his nose scrunched up. 

I laughed.  “That’s right!  Who comes on Christmas?”

“Santa Claus!”

“And what does Santa Claus bring?”

“Presents!”

I praised The Boy again and again.  Gave him a hug and kissed his cheeks.  I must have looked like an idiot, making such a big deal over such a little thing. 

It was the first real conversation we ever had.  In that moment I forgot The Boy had autism.  I forgot about the mother in her kitten heels and her son with his Christmas list and my seconds of envy.  I forgot that a doctor once said, The Boy might never utter a word.  I forgot about all the hours of speech therapy that were needed to get to that simple conversation. 

I was just a mother and he was just a little boy, excited about Christmas.  And maybe letting go of his hand was not so far away.

~~~~~~~~~

This essay was written November 2010 but was never posted.

Falling Back. Moving Forward.

Last night we turned back the clocks.  And I have to say, Daylight Savings,  is one of my favorite days of the year.  I always feel like I get so much more done.  I always feel an extra boost of energy.  And I spend my day thinking "Oh it's 1 o'clock, but it's really 2 o'clock."  The Boy let me sleep in until 8:30 am!  (Really 9:30 am) 

For me, falling back an hour makes a huge difference.  I feel like I'm getting something for nothing. 

Anyway...The Boy had a play date with his favorite Little Lady at Van Cortlandt Park.  Little Lady is about a year younger than The Boy.  And she is one of the few children that The Boy connects with.  At one point, Little Lady had run off and The Boy yelled out to her.  "Come here, let's go down the slide."  And those little moments, give me such joy.  

The Boy &  Little Lady

Running after Little Lady

When The Boy wasn't running after Little Lady, he was actually riding his scooter.  We've had this scooter for almost two years and he's never really gotten the concept of it.  Today was the first time he was able to do it! He was really trying, looking down at his feet.  Remembering to put on foot down, pushing himself and balancing.  It may not seem like a big deal to most parents, but trust me when I say - It's a BIG DEAL!   

Today may have been a day of falling back.  But The Boy is definitely moving forward. 

  


What's a Sunday like in your City?  Unknown Mami wants to know!  Go on over to Sundays In My City.  

The Boy as Boba Fett





Wordless Wednesday photo inspired by 10/11/11 post  

 Like Father, Like Son

Baby Steps to Building a Dream School

Ever since writing my post on Building a Dream School I have been amazed by all the support I've gotten.  And when HE sent me an email - that's when I really knew, people are actually reading.  And not only reading but interested in this project.  I mean, I know you all are in support.  We're old friends by now.  But other wonderful folks have sent me emails with encouraging words, asking what they can do to help, telling me about what works in their schools.

And it makes me feel like - okay, we really can do this.

The week after I wrote my post on Building a Dream School there happened to be a webinar - Charter School 101.  Talk about fate!  And other cool stuff like that has been happening.  I've been meeting people in the special education field.  A really close friend is working with some education groups in the City.  And slowly, I'm building this network of people who could help make the Dream School a reality.

Anyway, last night, I went to visit my very good friend, Michelle, who has experience setting up a non profit.  And we started filling out the paperwork!              

some of the paperwork/research materials

the Certificate

We're still not finished.  Just a few more details before the certification can be signed, sealed and delivered.

I realize that I am on a long road, that every step is a baby step.  A school can't be built in a day.  But I'm moving forward, whether this takes 1 year or  10 - I know that this will really happen.  

Another thing I've learned about this process is that it's time consuming and it costs money.  There are filing fees to consider, forms to fill out, a bank account to open, a budget to create...

I would love to be able to bankroll this whole project myself.  But the reality is - I can't.  And I would hate to see this project fall to the waste side because I cannot afford to start the initial process. 

If you would like to contribute to this, please click on the donate button.  

Every dollar makes a difference.              
 

Thank you!  

Post It Note Tuesday: Progress!

  

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.    

Few Words Wednesday: My Little Speller

Lately The Boy has 2 new obsessions interests:

• 20th Century Fox and (He rewinds the intro over and over and over)
• Phineas and Ferb

And when The Boy takes an interest in something, he likes to spell them out with his blocks.

"20th Century Fox"

"Phineas & Ferb"

The People We've Met Along The Way

This last week, I've been reminded of how much progress The Boy's made.  Like the other night when he sang "If You're Happy and You Know It" at 4 in the morning.  How amazed I was that he was able to sing the whole song and do all the steps simultaneously - effortlessly.  

I think about how when The Boy started  Early Intervention he had no words or way of communicating.  How he gradually acquired five words, then ten and now - three years later - he has enough words to carry on an argument. 

Me: How about Pizza for dinner?

The Boy: No.  How about another dinner?  I want Chinese rice.

And I think about all the hours of therapy it has taken him to get to this point.

  

All the people at school.  All the teachers, therapists and aides that have held his hand.  The revolving door of therapists coming in and out our home.  All the extra related services.  All the Board of Ed officials that I spoke to, faxed, emailed or argued  disagreed with.

All the people we've met along the way to help The Boy.  And us.  

All the people that provided advice.  Offered suggestions.  Gave us support.  All the people who listened.  Who let me cry in their offices.  Who willingly gave their time and energy to talk to me, answer my questions and address my concerns. 


All the people who were so patient in teaching The Boy, the most basic of tasks.  


All the people who rejoiced in The Boy's achievements as much as we did.  All the people who advocated for us.  All the people who assured me that there was hope, that The Boy had potential.  All the people who told me, everything will be okay. 


It wasn't one person, one program or one therapy.  It was a collective effort to get us to this point.  We could not have done this alone.  And I can't think of all the progress The Boy has made without thinking about the people we've met along the way.


How can I possibly thank them?  How can I possibly repay them?  There is no monetary value that I can place on that kind of assistance.  Or on the amount of gratitude I have.  And how can they possibly know the difference they've made in our lives? 

Yesterday was The Boy's final day of school. (read post here)  And after I put him on the school bus and walked away, I couldn't help but feel sad.  As if we were losing something special.  We've said goodbye to so many therapists over the last three years.   It still doesn't get  any easier.  The Boy doesn't really know the difference.  He's too young to value their importance as much as I do.  

I'm sure as the years pass, he may forget their names, their faces.  But I will remember.  And I will remind him.  The people that have walked into our lives, the ones I never expected to meet, the ones that changed our lives and the way we live - will never be forgotten.     

 

This post is included in S-O-S Best of the Best Edition 9: Therapy and Special Needs Kids. Best of the Best Editions are published on the 15th of every month.