World Autism Awareness Day - You're Never Too Young To Spread Awareness

I've spent the last three months going back and forth to the Kennedy Center.  We're having The Boy reevaluated.  And the process, has sparked lots of old feelings. 

In May it will be 4 years since The Boy's diagnosis.  And I think back to the April before the diagnosis - when I was waiting for the results of all the evaluations.  When I was hoping for the best while preparing for the worst.  When almost everyone was telling I was worrying for nothing.  When The Husband was certain there was nothing 'wrong.'  I didn't even know April was Autism Awareness Month or that April 2nd, was World Autism Awareness Day. 

Had I known what autism was, I wouldn't have waited so long.  I would have gone with my gut feeling and had The Boy evaluated months before he turned two years old.

But that's neither here nor there.  I can't turn back the clock.  I don't care about what caused autism.  And have no desire to cure The Boy. 

What I do care about and what I can do - is spread awareness.  I believe Autism Awareness and Acceptance needs to start at an early age.  Children who are taught to understand and accept autism, will grow into adults who understand and accept.

Some groups consider autism to be an epidemic - I don't believe that's true.  The real epidemic is ignorance.  And ignorance can be easily cured with knowledge.  No special studies or research needed.      

I'd like to share something that was sent to me by my FB friend Jessica - a fellow warrior mom.  Jessica has three beautiful children.  Emilia, Charlie & Stella.  Charlie has autism.  And Emilia was asked to give a speech at her school - in front of 400 children.  When Jessica shared Emilia's speech with me on Saturday - I was so incredibly moved and I knew I had to share it here.

Autism Awareness is Monday, April 2nd. Autism is a mental disorder that many kids, including my brother have. They aren't gross, or weird, or contagious. They are just like us, but have a hard time learning or communicating. Many people say that autism is a puzzle. They say this because autism is hard to figure out. The color blue represents autism, like pink represents breast cancer. Did you know that the Empire State Building lights up blue in honor of Autism Awareness? Lots of people are working to find a cure for autism. As I said before, Monday is Autism Awareness day, and I would like everyone in the school to wear blue on Monday to represent autism awareness.

Always

Unique

Totally

Intelligent

Sometimes
Mysterious

Emilia's speech will impact the way her classmates think about autism.  Not even 10 years old, and she's making a difference.  I wish there were more Emilia's in the world. 

I've learned so much being The Boy's mother.  Our children can teach us so much, all we need to do is listen.    

Charlie & Emilia - Stella's in the background



Today is World Autism Awareness Day.  But it's also Autism Awareness MONTH.  So if you didn't wear your blue today - you have the rest of the month to show your support.          

Celebrate World Autism Awareness Day at The United Nations

April 2, 2012 is World Autism Awareness Day and the Golden Hat Foundation is celebrating at the United Nations

Back in February I had the honor of meeting Margret Ericsdottir at a lunch hosted by The Ladies Home Journal.

Her story is inspiring and if you're in the NYC area and can make it - DO IT!  Here are the details -

1:00 pm - Book Signing at the United Nations Bookstore.

Come through the public entrance near 46th & 1st with a photo ID. (No RSVP required)

Margret Ericsdottir and her son, Keli Thorsteinsson will be signing copies of their book The Golden Hat: Talking Back To Autism.  Books pre-autographed by Kate Winslet will be available for purchase on a first come, first served basis.

6:00 pm - Screening of A Mother’s Courage: Talking Back to Autism. 

RSVP required -please send an email Lisa.Helt@goldenhatfoundation.org to RSVP

Refreshments will be graciously provided by Actavis, the primary sponsor of the film. The screening will take place in the General Assembly Building in the Express Bar on the 3rd Floor. Please use the visitor's entrance on 46th street. 

I don't think I'll be able to make the book signing but I want to try and make the screening.  
 

For further details click on the link below
  "A Mother's Courage: Talking Back to Autism" special screening 

"Unlocking Intelligence" One Voice at a Time

Over the last few years, I've read many stories of hope, love and dedication.   Stories about parents who have persevered and children defying the odds.  But last month, I was invited to a luncheon at the Ladies Home Journal office and heard an especially inspiring story.  A story about a mother, her nonverbal autistic son and a celebrity.

The luncheon was like a who's who of Special Needs writers.  And to be sitting at the same table with writers that have helped me through this journey, was truly an honor.  We were all invited to celebrate the March issue of Ladies Home Journal featuring Kate Winslet. In the article, Kate discusses her new book The Golden Hat: Talking Back To Autism  All proceeds from the book will go to The Golden Hat Foundation.



Me & Jean of http://www.mommytotwoboys.com/



Kate Winslet wasn't at the luncheon, but Margret Ericsdotter was.  Margret's husband, Fridrik Thor Fridriksson, filmed the documentary "A Mother's Courage: Talking Back to Autism." (trailer below - I dare you not to cry) The documentary features their non verbal autistic son, Keli, as well as "scientists in the field of autism and autism therapies and the parents of autistic children who share [Margret's] passion: to break down the wall between the children and the surrounding world."  Kate Winslet narrates the film. 

And it was Keli, who inspired Kate to start the The Golden Hat Foundation and write the book.


How Kate and Margret came to meet?  It's the kind of thing that happens in a movie; the kind of meeting that will change the lives of millions. And hearing Margret tell that story - I knew that their relationship went beyond Kate writing a check or lending her name; a beautiful friendship had developed.  The Golden Hat: Talking Back To Autism goes into detail of their meeting.  

My favorite part was when Margret talked about one of her first phone conversations with Kate.  Kate asked to speak to Keli.  Margret, caught off guard by the request, gently reminded Kate that Keli was nonverbal.  However, Kate remembered and she said, "I'll talk, he can listen."  (Hearing this, made me reach for my napkin to dry my eyes.)  

I won't say anything more about the book, I'd hate to spoil it.      


But I will tell you this.  The book is filled with celebrity self-portraits and quotes.  Kate asked her friends to put on her old Trilby hat, imagine them to think of all the individuals living with nonverbal autism and asked they share something that was important to them.  The quotes range from hilarious to poignant.

My favorite quote isn't necessarily from a celebrity.  It's from Don Shestack, a young nonverbal autistic man.  Don is nineteen and started communicating at nine years old.  When his mother  asked what he had "been doing all these years?" Don simply answered, "Listening."


That is what I imagine The Boy doing.  Even when he's not looking me in the eye.  Even when he doesn't answer.  Even when he can't answer.  Even when he's stuck in a stim.  I imagine him listening, absorbing the information and processing it in his own way, at his own pace.  (One day, I expect all those answers to come pouring out.)

We all know that saying - "Children should be seen and not heard."  So often, children/adults who are non verbal are considered "low functioning." Too often are they grossly underestimated and ignored.  The Golden Hat Foundation believes that non verbal autistics can be valuable members of society, if provided with the proper tools and support system. 

Once Keli started communicating at 10 years old, Margret realized that was intelligent and creative.  The name of the Foundation is based on a poem Keli wrote.   Keli's unique voice had been unlocked it the moment he picked up a  letter board.  And now, Margret and Kate are working to unlock others. 

We got to see a clip of the Margret and Kate interacting with some of the young men (including Keli) and women.  They communicated through a letter board, spelling out their words - pointing from letter to letter.  It was amazing to watch.  Even though they were nonverbal, even without much eye contact they were quick, witty and charming.       

What I respect most about The Golden Hat Foundation is that it doesn't support autism research.  It doesn't matter what causes or cures autism.  They care about improving the quality of life for nonverbal Autistic individuals.  Providing a secure living/work environment.   Creating a community where will people will always listen even if you cannot say a word.

Monday, April 2, 2012 is World Autism Awareness Day - Margret and Keli will make an appearance at the United Nations.  Margret will discuss the book and after she and Keli will be signing (Keli has difficulty writing but he will be stamping his name.) For event details click HERE.

The book will be released on March 27th but can be pre ordered by clicking  HERE. 

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.

     

Beyond Rain Man

Most people who don't know much about autism place it in 2 categories: Rain Man or Temple Grandin. But Rain Man is just a movie. And Temple Grandin – though certainly amazing and worthy of all accolades –  is just one person living with autism. Not every child diagnosed with autism will become a Temple Grandin. And that’s okay.  

There are so many every day success stories. Stories that get 5 minutes on the local news channel or shared through out Facebook. Stories that don't get made into movies, though their stories of commitment and perseverance are certainly movie worthy.  These are the stories that are changing the perception of autism.  So in honor of World Autism Awareness Day, I wanted to share a few.

Carly Fleischmann – Carly is a nonverbal teenage girl who has learned to communicate by typing.  Carly  has over 9,000 followers on Twitter.  She is definitely someone to follow @carlysvoice. 

Eric Duquette – the 18 year old who graduated HS – not only with honors but gave the commencement speech.  When first diagnosed, the doctors told his parents that he would end up in an institution.

Marken Suaza – a 10 year old Long Island boy who saved a classmate’s life by performing the Heimlich.  Marken blogs at Friends to Grow.  Marken appeared on Fox Five - the video may be viewed here.

Jason McElwain  - the high school basketball player who scored 20 points in 3 minutes.

Or my son – who when initially diagnosed at 2.5 years old had no language.  After three months of Early Intervention acquired 7 words.  By the time he aged out of E.I. – Norrin had hundreds of words.  Maybe thousands.  And here he is at 4.5 years old singing to his cousin.    

These are just 5 stories but there are thousands of boys and girls and men and women who are living with autism.  Autism does nothing to diminish their personalities, it enhances it.  Autism shapes who they are,  it creates the character of a group of individuals who are so often misunderstood.    

It Takes a Village (My speech given at St. John's University 1st Autism Awareness Month event)

When Alissa (the founder of Sprinkles of Hope) first asked me to speak, I was surprised and flattered and nervous.  I thought to myself – what am I going to talk about?  Writing a blog, updating my facebook status or tweeting is one thing – addressing an audience is another.  For the last 3 weeks I’ve been thinking about what I wanted to say – something that would be inspiring and hopeful. 

But last night I came home after a long day of work and a two-hour session of sensory gym with Norrin and I received another rejection letter from a school.  We’re in the Turning 5 process and it’s the 3^rd rejection letter we’ve gotten this month.  Our Turning 5 meeting was canceled the week before it was supposed to take place and I have no idea when it will be rescheduled.  And I have no idea where Norrin will go next year for Kindergarten.  It seems the decision is out of my hands.

March has been a tough month.  I’m far from inspired or hopeful –

I am frustrated.

A few months ago, Dr. Oz featured a show on Autism.  The parents Dr. Oz focused on described their life as “a nightmare,” and their children as “broken.” And Dr. Oz spent a great deal of time on “what causes autism.”

I don’t care what causes autism.  We are beyond that conversation.  The conversation that needs to happen is: How do we provide the proper support and services for our children. 

Autism itself is not the “nightmare.”  The nightmare is dealing with the Board of Education, budget cuts, and insurance companies, Medicaid waivers, never ending waiting lists, lack of services, lack of awareness and lack of acceptance.

The nightmare is calling an agency for services and hearing “Sorry – we don’t service the Bronx.”  Or calling the only after school program for children with autism in The Bronx and being told that there’s not only a 1 – 2 year waiting list but due to budget cuts – the program may terminate by September. 

The nightmare is the financial strain autism puts on a family.  Paying for private evaluations or therapies that insurance companies won’t cover or lawyer’s fees to secure appropriate school placement because our children are not entitled to the best.  Or families taking out 2^nd mortgages to pay for private school tuition – hoping the Board of Ed will reimburse them before the next years tuition is due.  The nightmare is pulling your child out of that program because the Board of Ed hasn’t paid you back and your money has run out. 

Our children are not “broken” and they don’t need to be fixed.  They need to be taught in a way that they can learn.  Considering we’ve been rejected from three schools this month, I am starting to wonder – who will be able to teach Norrin in the way that he can learn.

I’ve been told that I should move – to Queens, Long Island, Westchester or NJ.  Anyplace with a better school district.  But moving shouldn’t be an option.  Or a solution.  And even if I could afford to move, what about the other kids in the Borough that are left behind?

There is talk about restructuring Early Intervention – having parents pick up a percentage of the cost.  When Norrin was diagnosed 2 ½ years ago, we bombarded him with Early Intervention services.  We had a service provider in our home 5 – 6 days a week in addition to his center based program. 

At the time he was diagnosed – he had no language.  He couldn’t point, wave, make eye contact or sit still long enough to complete a simple task. 

But after months of intensive therapies – Norrin achieved all of those things and so much more.  His development has been amazing to watch and we never take a moment granted.  Every milestone is celebrated.  And there are moments, when it’s very easy to forget that there is a diagnosis, moments when he is just a boy and the words - typical or atypical – do not exist. 

The diagnosis has not defeated me, but the system comes dangerously close.  So while navigating the labyrinth of the Special Education System is financially and emotionally exhausting – hope sustains me.

When Norrin was first diagnosed we didn’t know anyone who had a child with Autism.  No friends or family member who can speak from experience and say – your child will be okay.  And there was no greater moment of isolation.  We had to create our own network.  And years later, my blog – AutismWonderland – was born.

But since Norrin’s diagnosis – our nephew and my best friend’s daughter have been diagnosed with autism.  And I want them to have the same level of services that Norrin received.  Services shouldn’t become privilege or a luxury, our children need the services and they are entitled to them. 

We’ve all heard that old proverb “It takes a village to raise a child.”  When it comes to having a child with autism or any other special need – it really does take a village.  It takes a village to support our children and it will take several villages to maintain appropriate services.  One person or parent or therapist cannot fight a system.  It takes every single person in this room to create a village and advocate.  It needs to be a collective effort.  To call, write or email the Governor, Mayor, Cathie Black, Borough Presidents and other elected officials.  We need to tell them what our children need.  We need to become one big loud squeaky wheel. 

Tomorrow is the first day of Autism Awareness Month.  But for me, and many of us here – it’s every day.  And Norrin has shown me the difference a day can make.  So let’s make our every day count.  

(from left to right) Angelica, Kenia, Me, The Boy, Allie & Alissa