I Asked. He Answered.

Me:  What's wrong?  Are you okay?


The Boy:  I have a boogie in my nose.

Me: You do!  Well then, here's a tissue for that boogie. 

I hand The Boy a tissue.  Too late.  He already used his finger.  I look over at The Husband and we burst out laughing.  

We call this: PROGRESS!

the LITTLE things are BIG deal #5

Post #5 for the LITTLE things are a BIG deal meme.  It's easy to link up and share your story. [copy/paste the button (above) in your post or sidebar.  Refer to my blog in your post & link to my current "the LITTLE things are a BIG deal" post. Link your post with Linky Tools. And if you link up, leave a comment.  Otherwise, it's like going to a party & not saying hi to the hostess.] For information click HERE.  You do not have to be a special needs parent to link up.  AutismWonderland is a community.  And I want to celebrate your every day wonderful moments with you. 

*

It was hard to tell who was happier to see the Monster Truck Jam Show: the fathers or the sons?  Families of four, five and six giddy with excitement.  Handmade poster board signs clutched in little hands.  Boys in groups, jumping up and down - placing bets on who would win.   

And then there was us.  The Husband giddy with excitement.  Me, nervous and cursing myself for not remembering  headphones.  And The Boy wanting to see Monster Trucks but upon seeing the crowd asked to go home.

As a kid, we always went to shows, Broadway musicals, the Circus, Disney on Ice, Radio City - and once, the opera.  And I knew it would be something I would do when  I was mom.  But these were thoughts before I was mom.  Before I even knew what autism was.

The Monster Truck Jam was our 2nd show; I bought the tickets with reluctance.  After The Backyardigans Live fiasco of 2008,  I told myself we would not buy tickets for another show until The Boy asked to go.

Even the movies have been tough for us.  We've been to 4 - and it's been hit or miss.  I'll spare you the ugly.  If you've got a kid on the spectrum, you know how ugly it can get.  

But back to Monster Truck Jam. We had gift certificates and The Husband insisted The Boy would love it.  So I got tickets.  

After we bought a set of headphones, a toy monster truck and ice cream, we found our seats.  And as soon as we sat down... 

The Boy:  It's time to go.

The Husband: Don't you want to see the Monster Trucks?

The Boy: Yes.  No - no it's time to go home.  

Me:  You see, I told you.  He's not going to like it.

The Husband:  He'll be fine. 

I rolled my eyes at The Husband.  We sat The Boy in between us.  I took off his jacket.  Ripped the toy truck out of the box.  And gave him his ice cream.  That got us through the intros and the national anthem.   (Bad American that I am - I didn't make The Boy stand for the anthem.)

And then...the trucks came out.  And as soon as they started revving their engines, The Boy jumped with surprise and quickly stuck his fingers in his ears.  "It's time to go.  It's time to go."  And he started to get up.

I got him to sit back down.  And tried to put the headphones on his head.  He yanked them off.  I looked at The Husband.  "He wants to go."  

"He'll be fine," The Husband assured me.

And then.  The first monster truck rolled over the first set of cars.  

And The Boy...SMILED!  And started to laugh.  

Fingers in ears.  Ice cream moustache.  Big smile.

And for the next two hours, we sat and watched trucks crush cars and motorcycles jump up into the air.

Well...The Husband and The Boy watched.  I spent most of my time watching The Boy.  Because the smile on his face and the sparkle in his eye, was better than any show I've ever seen.

Note to self if I ever go again: bring earplugs and Advil.  I left with the worst migraine ever. 
  
For more pics from the Monster Truck Show - click HERE!         
         

Sundays in my City: Monster Trucks, Crushed Cars & Good Fortunes

Be sure to come by tomorrow. I'm writing the story behind these photos -

 the LITTLE things are a BIG deal. 

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

Sh*t Autism Moms Might Say...(Special Saturday)

By now, you've had to have seen all of those "Sh*t _____ ____ say" videos.  If you haven't.  Where the hell have you been? 

I find some of them really freaking hilarious.  I could watch them over and over again.  Anyway...I've been thinking about every which way to make one.  But I wouldn't even know where to start.   So last week I saw this post at Love That Max and was thinking of writing my own.  And then I stopped by Aspie in the Family and read THIS post.  I knew, I had to write my own.  

So - here is my list of some of the Sh*t Autism Moms Might Say (or at the very least some of the Sh*t I Say regarding our life with autism) to their kid, their partner and anyone else:

Don't put that in your mouth!

Of course I'll read __________ again.  (It changes from week to week.)

GOOD JOB!

Aren't you sleepy?

Say 'hello'. 

Where are your pants?!

OMG - did you see what he just did?!

Did he poop?

He was up from 1 to 4 in the morning!

Did they write anything in the notebook?

I haven't slept.

He did it for the first time today!

He requires...

He hasn't really slept.  

It's appropriate.

No, no - I'll work around your schedule.

Autism isn't a disease. 

Uh, no...He's not like Rain Man. 

And now....one of my favorite "Sh*t _____ ____ Say" videos that's PC enough for hopefully everyone to enjoy!

 

 

~~~~~~~~~~~

Special Saturday is a blog organization to raise awareness of children with special needs.  This week’s theme is on the things we say as special needs parents.

     

TGIF

Hands down, no doubt about it - my least favorite phrase is "TGIF."  I especially hate hearing it at 8:48 am when I'm just getting into work.  Before my 2nd cup of coffee.  Because my feeling is - I don't want to hear TGIF at 8:48 in the morning.  I want to hear it/say it at 5:10 pm - when I'm walking in my apartment door.  After I've kicked off my shoes, peeled off my clothes and scrubbed the subway soot off my hands.  But today, I'm going to go against the grain and say scream: 

TGIF!

Because even though, I was off on Monday and out sick yesterday.  This week has dragged.  And I'm looking forward to not having to wake up at 5 am.  Not rushing to make the school bus or train.

*

On Monday, I took The Boy for the second appointment of his re-evaluation.  We have three more appointments to go...I'm not questioning the diagnosis.  I am 100% certain The Boy is autistic.  I just wish I had more of an idea of where he stands.  

And walking into these evals, they always ask the same question - cautiously.  "What are you looking for with this evaluation?"  And that's my cue to assure them, "I know The Boy is autistic..."  But the evals alone, is a other whole blog post.  It's coming.

*

This week, Hispanicize, announced some of the speakers for the 2012 Blog Conference in Miami.  And...I'm one of them!  I was pretty shocked to be asked.  I mean, I've never been to a blog conference before.  And to be asked to speak on the panel - Blogging for a Cause: How Latino Bloggers Are Using Social Media To Channel A Good Cause - with 3 other amazing Latina bloggers?  I am speechless.  Because I'm still new to this blog world.  I'm still figuring all of this out.  And becuase, quite honestly, I have a hard time considering myself a real blogger. 

*

Last June, I wrote this post: The Weight of Autism.  Well, I got on the Wii once again this week and you know what?  I've gained weight.  I'm not surprised, really.  I've been really stressed.  And I'm down to one pair of jeans that fit comfortably.  Thank goodness for leggings and elastic waistbands.  But I know I need to do something about it.  I need to take better care of myself.  For The Boy.  

*

But The Boy has a new way of making my day.  Lately, he's been saying "Mommy is cute and orange." And I think to myself: damn, he has me confused with freaking Snooki. And the sad part is, I WISH I had her tan. Well...sort of. Nah. Not really.   I don't know he picked up this phrase.   And it was sweet of him, holding my face.  Looking into my eyes and saying "Mommy is cute and orange."  It made me feel special...


Until I heard him say it in the parking lot of the Bay Plaza shopping center.  About a woman who was certainly cute but definitely not orange.

Play along! Don't know how?  

Check out Mrs. 4444

at Half Past Kissin Time 

for more Friday Fragments.

         

The IEP

For those of you not in the know - the IEP stands for the Individualized Education Plan.  The key word being I N D I V I D U A L I Z E D.

You see, when you have a kid with special needs, all of a sudden you become part of this team of therapists, special education teachers, social workers and psychologists.  This Special Education team that will discuss and determine the Individualized Education Plan for your child.    

However, the IEP meetings that I've walked into, I've always been made to feel as if I'm just there to sign the forms and be on my merry way.  And during more than one meeting, I've said - are we creating an Individualized Education Plan or a Generalized Education Plan?

Because when I've requested an additional speech session or OT at The Sensory Gym in addition to OT at school, they say "Generally, we provide...blah blah blah..."

Remember  - it's a dollar and cents game.       

Ever since The Boy's diagnosis in 2008, I've had to fight for services and fight to maintain.  And fight, I will.  Because if The Boy needs something.  You best be sure, I'm going to do my damnedest to get it.  And while I loved The Boy's progression.  I know that for every single step forward, the DOE (Dept of Education) is ready to take something away.  

I'm not a difficult person by nature.  I'm not confrontational or argumentative.  I'm a happy go lucky gal.  Super easy to get along with.  I can make friends with anyone.  But when it comes to The Boy?  And what he needs?  I will fight.  Because it's for him.  Isn't that my job?  As his mother.  

And I'm not making this IEP stuff up. It's the law.  BY LAW - The Boy is entitled to FAPE guaranteed by IDEA.  (for those of you not in the know - FAPE stands for Free and Appropriate Education and IDEA stands for Individuals with Disabilities Act).  

Okay - enough alphabet soup and back to the IEP and the point of this post. 

Lizbeth of Four Sea Stars wrote a great post, Anatomy of Classroom Desk where she  posted a photo of her son, Alex and all this stuff around his desk - to make his day easier.  And it's on his IEP. 

When I saw it, I said to myself - damn, why didn't I do any of that?  Oh well, the upside to IEPs is that they can get revised at any time.

And Lizbeth's posted prompted THIS IEP MEME.    

So, I here I go.  

My last IEP meeting was a joke...But if you're up for a laugh.  Because sometimes you just have to laugh.  You can read it here.

1. There are no tools on The Boy's IEP.  None.  I provided the school with a squishy pad to sit on.  I provide boxes of gum and squishy toys.  Do they understand why he needs these things? Do they use it?  Does it work?  I have no idea.  I've been pushed out of the loop of communication.  The Boy's OT suggested headphones to help The Boy cope but since I don't know whether or not they will use it during the day - I haven't bothered to purchase them.  The Boy's class does have a visual schedule posted but I'm not sure if he has one on his desk.

The Boy does have a BIP (Behavior Intervention Plan).  But I'm not really going there with that one and again - I'm out of the loop.   

2. The Boy receives Speech 3x30; OT 3x30 and PT 1x30.  The Boy attends a "regular" public school but is in a "specialized" class for children specifically with autism.  It's a 6:1:2.  (The Boy also has 8 hours of ABA at home.  This is not on the IEP - we pay for this privately.) 

3. Since The Boy has started kindergarten at this school, I have seen progress.  However I'm not completely convinced it's due to his school placement or services.  I'm not convinced of their effectiveness. 

The speech therapist is really nice, very enthusiastic - which is great to see.  However, she is doesn't have a background in autism - she's learning.  And The Boy's services are in a group of 3 - he needs to have at least 1 individual session.  The speech therapist recommended this too.  But since she's the only one for the entire school, she does not have room in her schedule to provide a one on one session. 

As for OT - The Boy was not provided with OT services at school for the first few months.  The school did not have an OT.  (I was paying for OT sessions privately) When I requested an RSA letter, I was initially told to call 311.  We finally have an RSA and we have a fabulous OT.  And I am certain that she is effective when working with The Boy.        

What I do find most effective is not on the IEP - is the BCBA/ABA therapists that come to our home.  We pay for this privately but it's worth the sacrifice and I'm fortunate to have really good insurance.

    

the LITTLE things are a BIG deal #4

Post #4 for the LITTLE things are a BIG deal meme.  It's easy to link up and share your story. [copy/paste the button (above) in your post or sidebar.  Refer to my blog in your post & link to my current "the LITTLE things are a BIG deal" post. Link your post with Linky Tools. And if you link up, leave a comment.  Otherwise, it's like going to a party & not saying hi to the hostess.] For information click HERE.  You do not have to be a special needs parent to link up.  AutismWonderland is a community.  And I want to celebrate your every day wonderful moments with you. 

*

Last week I posted this picture of a little project The Husband and The Boy worked on. It was pretty cool.  The two of them sitting together at the table.  The Husband, prompting The Boy.  The Boy, really listening and following directions.  

And thinking about the two of them, sitting together reminds me how lucky I am to have married a man like The Husband.  Especially after I read this post by Autism Daddy.

Obviously, I'm not a man but I think it's harder for fathers to accept autism.  And I'm almost certain it's the reason why so many men choose to leave. 


I remember the day when The Boy was diagnosed.  How The Husband's hands shook.  How he cried in the car before driving us home.  How it took him a long long long time before he actually said the words, "My son is autistic."  

We never really talked about it then, but I knew how devastated he was.  I knew how important it was to him that The Boy play football and baseball and golf.   I knew The Husband couldn't wait to take The Boy to his first game at Yankee Stadium.  And when The Husband heard the words "your son has autism,"  I think he wondered how it would impact their relationship.

But it's been three years since The Boy's diagnosis.  And The Boy and The Husband have an amazing relationship.  And I think it's made The Husband realize, they don't need sports to bond. 

Two years ago, when The Husband came home with a Frog & Toad book, I didn't think The Boy would like it.  "Oh he will.  It was my favorite when I was a kid," The Husband told me.  


And he was right.  The Boy LOVES Frog & Toad.  Laughs out loud, when we read it. Truth be told, laughing out much louder when The Husband reads.

And then last week, as The Husband and The Boy worked on their little plane project.  It's not the first time they've done something like that.  They both enjoy it.  It's their time to bond as father and son. 

The Husband has found a way to connect - without sports.   They have found their "thing" and it's good for both of them.

This is the finished product.  It took less than an hour (not including the time needed for the paint to dry).  But it's a memory that will last our lifetime.  

 

Autism doesn't mean a son needs his father less.  It means a son needs his father even more. 

Autistic Today. Typical Tomorrow? (or Who will benefit from the proposed changes to the autism definition?

If you have a child somewhere, anywhere on the autism spectrum, you probably read this article by now.   If you haven't, here are what I deem as "the highlights": 

The definition [of autism] is now being reassessed by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, the first major revision in 17 years. 

*

The changes would narrow the diagnosis so much that it could effectively end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal. “We would nip it in the bud.”

*

At least a million children and adults have a diagnosis of autism or a related disorder, like Asperger syndrome or “pervasive developmental disorder, not otherwise specified,” also known as P.D.D.-N.O.S. People with Asperger’s or P.D.D.-N.O.S. endure some of the same social struggles as those with autism but do not meet the definition for the full-blown version. The proposed change would consolidate all three diagnoses under one category, autism spectrum disorder, eliminating Asperger syndrome and P.D.D.-N.O.S. from the manual.

(I won't divulge my immediate reaction upon reading this article.  While in real life, I may have quite the potty mouth, I just don't write that way.) 
 
If the proposed changes are made, this will not impact The Boy.  He's autistic.  He'll fit the criteria today, tomorrow and quite possibly twenty years from now.  No ifs, ands or buts about it.

But it could impact many people I know.  And I know how critical services are to their families. 

What Do Services Have To Do With It?

I don't know how it works in other parts of the country/world?  But within New York City?  Diagnosis is EVERYTHING.  And even with a diagnosis, you still need to fight tooth and nail for appropriate services.  They're just not given out like candy.     

And if the criteria of diagnosis changes...so will the services.   Services like OT, PT and Speech.  And school placements in smaller classrooms or specialized school programs unfunded by the New York Department of Education.  

More importantly, how will that impact Special Education Laws?  What will become of appropriate school placement?

And when I think of my best friend's daughter who has a PDD-NOS diagnosis - a little girl who is at age level, cognitively but has speech delays and requires a smaller classroom setting. She's currently in a specialized preschool and receives OT and Speech.  If the criteria changes - will she no longer qualify for special education?  Will the DOE recommend she be placed in a typical classroom of 25 or more kids?  It's quite possible.  But it's not where she belongs.  And it's absolutely not where she will succeed.  (Not as of now anyway.)

For the last few years, I've heard about budget cuts to special education, special needs services and medicaid.  I've heard of agencies and schools shutting down and therapists moving on to other careers.  In areas like The Bronx, where services and therapists and finances are already extremely limited, what will families do to ensure their child gets the therapies they need?  Will their children have a chance?

And please don't me get started on insurance companies who will do absolutely anything not to pay for services...

As it is, The Boy has a diagnosis and my insurance still gives me the run around.  

Maybe I'm reading this article all wrong.  I mean, I'm not a doctor.  Nor am I business analyst.  I'm just a mom.  But to me, the only people who this may benefit from the diagnostic change criteria are government agencies.  

So MY Big Question is:

What exactly are they trying to nip in the bud?

~~~~~~
If you are opposed to the change - please sign this petition.
(petition started by the Mom behind The Aspie Side of Life)   

Dear Norrin: A Birthday Letter from Mother to Son

Dear Norrin,

Today is your 6th birthday.  It's official - you're a big kid now, no longer a baby.  The years are going by too quickly and I wish I could slow things down.  I wish I could press pause every once in a while.  But I can't. 

Today you are six; then next you'll be seven and before we both know it - you'll be a man.  But I'm not ready to think about that just yet.  

I want to linger in this moment for as long as I can.

This morning you woke up 2:30 am.  All smiles and eye contact.  And luckily your dad was able to put you back to sleep quickly.  And then when it was time to wake up, I asked you what day it was.  And you said "It's my birthday."

And all week long you've been talking about your birthday.  This is the first year, you've done that. 

It's also your first birthday that falls on the day you were actually born.  You were born on a Friday, so in my mind this makes today extra special.

I have spent the last 6 years watching you in amazement.  I remember bringing you home that Sunday 6 years ago and watching you sleep in your crib.  And I remember the first time you crawled out of that crib. 

I remember waiting anxiously for first words.  For a while, I thought they may never come.  But they did.  And I hang on your every word, even if I don't always understand what you are saying.  I hear you.   

I know that things don't come easily for you.  I know that there are things you find difficult and frustrating.  But you will find a way...in your own time.  Because every day you do something that you didn't do the day before.  Every day you surprise me.  Inspire me.  And amaze me.  All the progress you have made - I see it.

 

And I am so proud of the boy you're growing up to be.
 

Tonight we will light your candles and cut a cake.  You'll tear open your presents.  Maybe you'll make a wish.  If you do, I will probably never know what it is.  And when you play with your toys, you may not know how to say which one is your favorite.  I'll know just by your smile. 

You are too young to understand this now.  But one day you will read this.  And I want you to know that you are the greatest wish I could have ever hoped for.  And the best gift I've ever been given.   

With all my love,
Mommy

You have brains in your head.
You have feet in your shoes
You can steer yourself
any direction you choose.
You're on your own.  And you know what you know.
And YOU are the guy who'll decide where to go.

    Dr. Seuss, Oh The Place You'll Go! 

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 well...in 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.)

a Father n Son project

Please Don't Censor the Web

Okay, I realize this is sort of cheating, but I just can't figure out how to black out my site.  

So this will have to do.  

Imagine there's no Google. 

Or Wikipedia too. 

No Facebook to distract us. 

No more videos on YouTube.

Imagine a world without your favorite Blogs.

What the hell would you do?

FAQs: How SOPA Would Affect You

Contact Congress.  Take Action. 

Please don't censor the web.