My Name is _________ and I am #1in88

This post was inspired by Jess of Diary of a Mom.  She wrote the post - Not Just Numbers, PEOPLE.  (excellent post!) And asked readers to tweet the following - 

“@diaryofamom @autismspeaks Not just numbers, PEOPLE. This is the face of #1in88” with your photo.

This is the photo I tweeted.  And I tweaked my photo for this post.  


I read somewhere that the average person has about 130 Facebook friends.  The new CDC states that about 1 in 88 children has been identified with an autism spectrum disorder (ASD).  (Click HERE for the full CDC report. I have mixed feelings about this.  But that's for another post.)   


Now I'm no math genius but if the statics are true, then you must know someone with autism.  And maybe if we're FB friends, then Norrin is the one that you know.      

April is Autism Awareness Month and I have so much that I want to share.  For now, I'll leave you with this picture of my son Norrin aka The Boy.  He is 6 years old.  He has autism.  He is autistic.  I don't care what caused it.  And I don't want him to be cured.  He doesn't suffer from autism.  And our life is not one to feel sorry for.  I am his mother.  And I love him.


I would love for you to link up a picture of your child here and share it with Jess too.

Here's what to do:

1. Upload a picture of your child picnik.com (site will close on 4/19/12) or quickmeme.com and use the following as your caption:  Hi.  My name is _______.  Not just numbers, PEOPLE. I am #1in88
2. Write a blog post including your child's photo and link back to this post.
3. Link up your post here - it will be up until 4/30/12. 
4.  TWEET “@diaryofamom @autismspeaks Not just numbers, PEOPLE. This is the face of #1in88” and link to your blog post (it must be the post, you're linking here).
5. Visit the blogger before (or as many as you'd like) and tell them how wonderful their child is.
6. Like the blogs that have linked up.  The ones with the most "likes" will win a special prize*.   (I'm still figuring that part out)  

* in order to be eligeble for the prize your post must follow all steps.
* I'm funding the prize part with my own money - more details to follow.  Due to shipping costs, will need to restrict it to US Residents only. 

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 

"As a Parent"

Going into IEP meetings, I've noticed that some education professionals like to start sentences with, "As a parent..." blah blah blah blah.  Maybe it's their way of letting parents know that, they get it.

But every time I hear those three words, I realize that they don't get it all.  And I want to hold up my hand and ask "Are you a parent like me?"   

Because as a parent, I have had to put my child on a school bus before he could speak and while he was still in diapers.  

As a parent, I've wondered if my child will ever speak.

As a parent, I've stayed up nights worrying about what my child's life will be like when I'm gone.

As a parent, I've had to separate my child from his diagnosis.


As a parent, I have had strangers in and out of my home, helping my child learn the most basic tasks.

As a parent, I've had to rearrange my work schedule to accommodate all the strangers in and out of my home. 

As a parent, I've had to turn down invitations to birthday parties and gatherings because therapy always comes first. 

As a parent, I've had to turn down invitations to birthday parties and gatherings because I knew the invitation would be in a place my child could not handle.

As a parent, I've had to teach my child how to imagine, to play and pretend.

As a parent, I use the majority of my vacation days for doctors appointments and evaluations. 

As a parent, I cried, the first time my child said Mommy because I thought the words would never return.

As a parent, I marvel at every single accomplishment my child makes, because I know how hard my child had to work to achieve it.

As a parent, I wonder what his days are like because even though my child has speech, he cannot tell me what he had for lunch, what he did in school or about the best part of his day.

As a parent, I've learned to ignore strangers staring at my child.

As a parent, I've had to study special education laws and different teaching methodologies.

As a parent, I've had strangers, determine what is most appropriate for my child.

As a parent, I've had to fight for my child to get the appropriate services he needs.

As a parent, I've had to fight the people who start their sentences with "As a parent..."

I Cannot Lose Him

I remember The Boy clapping his hands on his first birthday.  


And I remember at that time, he had two words:  Mama and Oh Boy.  (Okay, that's three.)


By The Boy's second birthday, he couldn't clap anymore.  


Or point a finger.


Or look me in the eye.  


Or utter a word.  The three words he had.  He lost.  


Somewhere between that first year and second year, I lost him.  It's called Regression.


And we needed an ABA therapist in our home, 15 hours a week, to teach The Boy how to clap.  Point.  Wave.  


And we needed a Speech Pathologist to help The Boy to say Mama.


The Boy's come such a long long way.  He works so hard. 


Does he still have behaviors?  Yes.  


Will he always look me in the eye?  Nope.  


But he's an amazing kid.  Super smart.  Charismatic.  And funny.  


Not everyone sees what I see.  Not everyone believes, the way I believe.


I realized that this morning, when I toured a District 75 school that someone from the district recommended.  This person, has had limited interactions with The Boy.  I'm going to go out on a limb and say that this person has possibly skimmed The Boy's IEP.  I've given up the belief that anyone from the districts reads the entire IEP.


You may be asking - why I'm touring schools.  Well, after months of going back and forth with the principals, the teacher, the district - they've finally come clean.  The Boy is no longer appropriate for the school program that is so appropriate on paper.


And they are ready to toss him into the first District 75 school with an opening.  


But the people that really know The Boy?  The people that have worked with and truly care for The Boy know that District 75 is not the appropriate placement.  


And the other day, I came across this blog post written by a special needs attorney.  In the post, he writes, "...of the 15,000 children turning 5 who were recently referred to District 75, only 1,000 actually belonged there."  And where did the attorney get that idea from?  Gary Hecht, the superintendent of District 75.   (D'OH!)


Granted that post, was written two years ago.  But like I said.  I toured a District 75 school today.  And I'm going to say it again - THE BOY DOES NOT BELONG THERE!


Quite honestly, what I saw today was quite upsetting.  


I saw a boy strapped in a wooden "wheelchair" being pulled backwards, like he was luggage.      He was missing a shoe and sock. 


I heard paras yelling at children.   


And the man who gave me the tour talked in great detail about "taking down a child."  He also referred to a classroom as a "last stop" before institutionalization.  That classroom, was  third grade room.


I saw an OT/PT room filled with equipment that looked as if it hadn't been moved in months.  


And I saw children in wheelchairs getting their OT/PT services in the hallway because the OT/PT room was in the basement.  And there was no way for the children in wheelchairs to get down to there.


I saw the autistic classrooms, doing "touch your head" and "point to the letter ---."  And that's perfectly fine, if that's what a child needs.  


But that's not what The Boy needs.  


And I didn't see a single child in that school like The Boy.


If placed in that school, The Boy would never have a peer. The Boy would never be challenged.   The Boy will be set back three years.  The Boy will most likely regress.    


And I cannot lose him again.  
                 

It's a Curious George Dance Contest!

In my younger years, I loved going out dancing.  Every Friday, Saturday night and even a few nights during the week.  These days, instead of dancing to DJ Camilo, I'm dancing to whatever The Boy is into.


We're in a Curious George phase right now.  The books, the DVDs, the TV show.  And that theme song?  The Boy can play it over and over again.  I find myself humming along at random times of the day.  It almost makes me regret showing him how to use the remote control.


Almost.  Curious George was one of my childhood favorites and I like that we share that common bond.   I get a kick out of watching The Boy enjoy a good song and singing along.  And I love watching him dance.  Though he doesn't do it consistently.  


Sometimes, The Husband and I will dance around the apartment and ask The Boy to look at us.  We use exaggerated movements and laugh to show The Boy that dancing is fun. Sometimes we'll grab The Boy by the hand and ask him to dance with us.  Sometimes The Boy will dance.  Sometimes, he'll push us away.  It doesn't matter.  We keep trying.     


So when The Boy dances on his own, without any kind of bribery prompting, it's a pretty big deal.  And he's doing it more often.  


Dancing is great exercise and movement for all children, but music and dancing have real benefits for autistic children.  I know it's definitely helped The Boy - in terms of language, imagination, coordination and socialization.  And so, we try to encourage The Boy to dance whenever possible.  


Curious George is encouraging dance too - with a contest!  And who doesn't love a good dance contest?

So here's the gist of it: 

Send in a video* of your kid grooving to the Curious George theme song* by April 2, 2012. 


A panel of judges will select 10 finalists (videos) based on enthusiasm, creativity, and originality. Let your kids get as wonderous, curious and marvelous as they wanna be!  


The Top 10 videos will  be posted online and Curious George fans can vote to select the grand prize winner.  Voting will take place between April 16 thru April 30, 2012.


The winning video will be included in a Curious George DVD and the grand prize winner will be announced in May 2012. The grand prize winner will also receive a Curiosity Kit (see below) may even get a visit from Curious George himself.  The Top 1o finalists will also receive a Curiosity Kit prize. 

CG (R) & (C) 2012 Universal Studios and/or HMH. All Rights Reserved. FOR PROMOTIONAL USE ONLY

*There are video requirements and you will need to download the Curious George theme song.  There are also rules and a submission form.  So for more information and to officially enter the contest please visit CuriousGeorgeDanceContest.com

CG (R) & (C) 2012 Universal Studios and/or HMH. All Rights Reserved. FOR PROMOTIONAL USE ONLY

Disclosure: This is a sponsored post in collaboration with Latina Bloggers Connect and WGBH.  All thoughts, opinions and love for Curious George and dance are my own.

Great Expectations

A few weeks ago, the editors at www.SpecialNeeds.com asked me to write a guest post.  And when anyone asks me to write anything, it's a pretty big deal for me.  And this guest post was inspired by my fabulous FB AutismWonderland community.  


For those that know me IRL know that we've been going through some stuff.  It hasn't been easy.  I'd like it to be over.  I'd like some peace of mind.


Being a Special Needs Parent means you rely on a lot of people - strangers, really - to help you with your kid.   For the most part, you have strangers helping you make decisions about your child.  Because our children - special needs children - are not entitled to the best.  They are only entitled to the "appropriate."  


But "appropriate" means different things to different people.  And the Special Education in New York City is run like a business.  


And our children are viewed as expenses.  


And many of the teachers and special educators are required to pick a side.  


And like in any other business, in order to get ahead, you need to side with The Boss.  


And siding with The Boss, means you have to forget about the children and families who rely on you.  


The thing is - Special Needs Parents don't expect you to take sides.  We expect you to do the right thing.  If you're a Special Needs Professional you may think my guest post - Great Expectations - is too much to ask for.  But for us,  for Special Needs Parents, it's pretty basic.

10 Awesome Things About an Autism Mom

Last Monday was International Woman's Day.  And to honor that day, Stasha, decided that today's Monday Listicles would celebrate being a woman.  ""Anything Goes," she said.  And immediately, I knew I wanted to write about autism moms.  I am always so inspired by the women I meet and the stories I hear.  It was hard to narrow it down to 10 - there may be a part 2 somewhere in the future. But for now, here is my list:  

10 Awesome Things About Being an Autism Mom

1. We can go days, weeks, months, years without a full night's sleep.  We have mastered the art of sleeping with one eye open.  (maybe this isn't so awesome...)

2. We will forget many things - why we walked into the kitchen from the living room.  The name of that actor from that movie we love (wait...what was the name of the movie again?) Or what we wore the day before.  But we will never forget anything related to our kids and their services.  We can tell you what month they started.  We can recite passages of IEPs and evaluations from years past.  We can dictate passages from FAPE and IDEA and Sections of special education law. 

3. We have the ability to wait on hold for hours. 

4.  We have super hearing.  When out with our kids - we can distinguish the sound of their stim in a crowd.

5.  We have faith.  We don't have to be religious but we have a strong sense of faith in our kids.

6.  We have a broad imagination.  We are always thinking outside of the box in order to teach our kids.  

7. We wear many hats - wife, mother, teacher, chef, maid, boo boo kisser, friend, advocate, attorney, social worker.   

8. When it comes to our kids, we have extreme amounts of patience.  We can explain the same thing 20, 30, 40 times.

9. We appreciate the little things - like pointing a finger or hearing a WH question for the first time.  We take nothing for granted because we know how hard our kids work.

10. We are visionaries.  When it comes to our kids.  Where we see a void - we work to fill it.  We become the change we want to see in the world.   Like local NYC Mom Jackie of SNACK.  Or Patty Porch - who started a LEGO Social Club.  Or Margret - who inspired The Golden Hat Foundation.

What The NYC Public School Special Education System Really Needs

Pardon the shameful social media self promotion. 
I'm on Pinterest.  Look for me - LaliQuin (same as my twitter name) Add me.  Repin me.  
And if you're not on Pinterest yet?  Why not?  Go ahead, sign up...yeah, it's a wee bit confusing (at least it is for me)  But let's figure it out together.  Because you've got to be in it to PIN IT. 

Back to the Future...with Special Needs Ryan Gosling

What do you wish Special Needs Ryan Gosling could make for you?

  And just in case you have no idea what I'm referencing...click HERE. 


For more Special Needs Ryan Gosling laughs, snark & wishful thinking...check out Adventures in Extreme Parenthood

Ready to create your own?  Here's what to do:

• Make your Special Needs Ryan Gosling poster(s) then enter your name and blog address below and we can visit each other's blogs and have a good laugh.
• Be sure to check back often in the days to come because the list may grow as others see our posts and want to join in on the fun.  Also, if you share your blog post on Twitter please add the #SNryangosling hashtag so that it will streamline all the posts together.  
• Stay tuned next Wednesday for the new Ryan Gosling photo and link up with Sunday again next Friday!
• Dont forget to grab Sunday's button

Sometimes Things Fall Apart...

"Sometimes things fall apart so better things can fall together."

(not sure if this is the exact quote or who even said it.)

The other day one of my FB friends posted this quote or something similar (I can't remember exactly) as their status update.  And well, I certainly hope this is the case.  Because lately things seem to be falling apart.

There is so much uncertainty lately.  Well, if I'm going to be completely honest - there's been uncertainty since The Boy's first day of kindergarten.  I remember this time last year, feeling tangled in red tape, overwhelmed and unsure as to what would happen in September.   

And so much has happened this school year.  Things I cannot write about.  But I will say this.  It's been incredibly disappointing.  And frustrating.

And while The Boy has come so far since September and I'm please with his progress.  I'm still at a complete loss. 

And I have raised questions and concerns that go ignored and unanswered.

And I have become cynical.  And I have lost both faith and respect in the New York Board of Special Education. 

And that's unfortunate because I wanted so hard to believe that ultimately - people will do right thing by a child with special needs. 

And bottom line.  More often than not.  They don't. 

Children are no longer children but a number in a broken system.         
 
And then last week - I stood in the rain for an hour.  Waiting for The Boy.  With The Boy's ABA therapist (that I pay for privately).  Needless to say, The Boy lost an hour of therapy. 

And when I called the school bus matrons, I was told that 2 more children were added to the route. 

And I could hear The Boy in the background - his high pitched perseverating speech.  And I knew he was confused.  Nervous.  Unsure of what was happening because The Boy memorizes routes.

The Boy is put on the bus at 2:20 pm (I think this is the time.  Though when I called The Boy's school to confirm, no one seemed to know.  But they did tell me, the bus is often late.  But that's for another post...)  And he didn't get home until 4:45 pm.  That means my 6 year old autistic child was on a school bus for 2 hours and 25 minutes.  And the matrons told me that 4:30 - 4:45 would be his new drop off time.

And I'm supposed to shut up and be okay with it?  Oh Hell Motha Effin NO! 

The school is less than 6 miles away.  He just turned 6.  He's autistic.  He has a 6 hour school day and over 4 hours in commuting each way.  I'm sorry, I don't want to be on a bus for more than an hour - let alone 2! 

So I wrote a letter to the person in charge of Office Pupil Transportation (OPT). 

And I may have cc'd the Borough President.  And um...The Chancellor.  (Because you know, me & Dennis are cool like that.)

They are working on it and The Boy has been getting home a few minutes earlier every day.

And you know what the OPT dude had the nerve to say that it wasn't necessary for me to cc those folks. 

Well...I beg to differ.  I will cc whoever it takes.  I will call and write whoever I need.  And I will do whatever it takes.  To make sure that The Boy's needs are being met.  That he has the appropriate services he needs.  That is my job.

And even when the NY Board of Ed & OPT don't do their jobs - that's fine.  I will continue to do mine.

So let things continue to fall apart.  Mama's putting it back together. 


(Yeah...um, this post is kind of all over the place.  But I have lots going on and my mind if sort of all over the place too.)         

         
 

Spread the Word to End the Word

I'm Puerto Rican.  Would you call me Spic?

Probably not.

Would you use any kind of slur to degrade yourself or insult someone or something else?  Chances are if you're a decent human being - you wouldn't. 

So why is it okay to use the word "retard" as an insult?  

March 7, 2012 is officially Spread the Word to End the Word Day  and if "retard" is part of your vocabulary, I urge you to stop & think about what the word implies.  

The Boy is a bright and beautiful kid.  But many of his test scores fall in the Intellectual Disability (formerly "Mentally Retarded") range.  Look at his smile.  Would you call The Boy retarded?      

I won't say any more.  But please take time to watch any (or all) of the videos.  They explain it far better than I can.  Especially the one below by my blog pal Ellen of Love that Max  - Her boy Max is pretty awesome :) 
   

"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. 

Our Sunday Morning: Sundays in my City

Off to the Market.  I make him push. 

Like any other kid, he make purchase suggestions.  Sometimes I listen. 

The cereal aisle is his favorite.  We spend a lot of time here.  A LOT.

I make him push the cart back too.  The heavier the better!  That's an OT/SPD work out.

His reward for being a good boy this week.  It took about 10 pictures to get this shot...

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

Hey Girl. (Special Needs Ryan Gosling)

Have you been following Sunday Stillwell's Ryan Gosling meme?   It's HYSTERICAL!  And let's face it - we all need to just throw back our heads back and laugh.  Because if we can't laugh, we'll cry.

Thanks for making me laugh, Sunday :)

Anyway...Sunday is inviting others to join in on the fun and create their own Special Needs Ryan Gosling poster.  Here's mine -         

Melatonin (aka "bedtime candy") works wonders for The Boy!



Ready to create your own?  Here's what to do:

 

• Make your Special Needs Ryan Gosling poster(s) then enter your name and blog address below and we can visit each other's blogs and have a good laugh.
• Be sure to check back often in the days to come because the list may grow as others see our posts and want to join in on the fun.  Also, if you share your blog post on Twitter please add the #SNryangosling hashtag so that it will streamline all the posts together.  
• Stay tuned next Wednesday for the new Ryan Gosling photo and link up with Sunday again next Friday!
• Dont forget to grab Sunday's button