Monday, August 22, 2011

More Than a Popularity Contest

I have a confession.  Something I once thought, that I'm not proud of.  It was years before The Boy was born.  I was twenty-something and started a new job.  It was the first time I met someone who had children with autism.  He was an attorney with three young children, two were on the spectrum. Prior to this, my only experience with autism was the movie Rain Man.

I assumed autism was  something that predominantly affected Caucasians.  (Kind of like how sickle cell anaemia is predominant in African Americans.)  And whenever I think about this, I am so ashamed of my ignorance.  How could I not know?  As a well read, fairly educated young married woman - how could I not know about autism?  

I think it's why I spend so much time focusing on my blog and on spreading awareness.  Because when The Boy was first born, I knew absolutely nothing.  I had no idea that autism could be a possibility.  I didn't know the signs.  And while we still caught it early, I could have had him evaluated sooner.  I could have done so much more.  If only I knew.  That kind of guilt is hard to let go.

After The Boy was evaluated and diagnosed, I immediately went to the only book store in The Bronx and picked up a bunch of books on autism.  At the time, I was determined to "fix him."

All the books I purchased and read were all written by Caucasian women and men.  Women and men with acronyms or initials following their names.  Suburban families from far away places.  Their experiences, their struggles, their sacrifices were completely foreign to me.  The spoke of 2nd mortgages, quitting careers, downgrading homes, moving to different neighborhoods.

Do not misinterpret my words, these books were of value to me and they helped me understand.  They helped me move on.  I learned a great deal. 

But The Husband and I had no careers to quit.  I was (still am) just a secretary and The Husband, a Fed Ex courier.  We both needed to work.  Living on one income was out of the question.  And we lived in a two-bedroom apartment - what could we possibly downgrade too?

And so these books intimidated me.  If these affluent families, struggled - what hope could we possibly have?

I wanted to read the story I could relate to - in every sense. 

Unfortunately, when it comes to autism in the mainstream media, Latinos are not represented. 

It's just not something we talk about.  Out of all the Latina mom bloggers I've come across in the blogosphere - I can count the ones writing exclusively about autism.

And I remember after The Boy was diagnosed, my mother said: You don't need to go telling everyone about this.  As if "this," autism was something to be ashamed of.  As if talking about it was wrong.  (Clearly, I do not always listen to my mother.)   

Even The Boy's Early Intervention ABA therapist was surprised by my honesty.  If we were out in the playground or walking around the neighborhood and I ran into someone I knew, I'd introduce her. "This is Gen, The Boy's therapist."  And I'd start talking about the diagnosis.       

Autism isn't a black or white (pardon the pun) issue, it's  a spectrum.  And I'd like to see more diversity when it comes to featuring autism families.  There are dedicated parents of every color, creed and socio-economic status.

I would love for parents to realize:

You don't need to quit your job. 
You don't need to have a six figure salary.
You don't need a big house with a yard.
You don't have to live in the 'right' neighborhood or school district to get your child the help he/she deserves. 
You don't (always) need to hire a lawyer.  

My nomination for Parents Magazine Best Special Needs Blog means more than winning a popularity contest.  It's a chance for our voice to be heard.  The Bronx is often stigmatized and underestimated.  And I've met so many amazing mothers and fathers, that are working hard for their children.  I would love to be featured as an urban Puerto Rican family raising a young child with autism and making it work.  I would love to represent the borough I live in and the Latino community.

So if you like my writing and/or find my blog helpful, I'd appreciate a vote of support.  And after you vote for AutismWonderland, explore the other special needs blogs nominated I'm in some great company. 

How to vote:

1. Click on the Parents button

2. Another window will open.  (see below)

3. In order to vote, you will need to register. Enter your email address, create password.  You will be asked if you're: a parent, trying to conceive or other.  Once you've registered you should be able to vote.

If you get an ERROR message 
Return to my blogsite - on the parents button (again)

2. Another window should open (again)

AND you should be able to vote. 

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AutismWonderland - written by Lisa Quinones-Fontanez - is a personal blog chronicling a NYC family's journey with autism, while also sharing local resources for children/families with special needs.