January 19, 2010

January 19, 2010.  This date probably doesn’t have a significant meaning to you unless it happens to be your birthday, anniversary, or some other milestone with cause for celebration or remembrance.  For my family, that was the day our lives changed forever.  That was the day our sweet girl got diagnosed with the big, bad “A” word…AUTISM, and our crazy little adventure began.

I’m getting ahead of myself, so let’s back up a little…

Once upon a time, we were expecting our first baby, a little girl, and we were beyond thrilled! The pregnancy was obnoxiously easy (no morning sickness, glowing skin, and only gained 25 lbs.).  Sorry, I told you it was obnoxious!  At 6:44pm on May 1, 2007, we were introduced (via C-section) to the most beautiful, 9 pound, 9 ounce little girl we’ve ever laid eyes upon. She was absolutely perfect, albeit the size of a 3-month old!

The first year went by smoothly, just like how all the What to Expect books describe.  She loved jumping on the mattress in her crib, and we affectionately started referring to her as our little jumping bean, (Bean for short).  It wasn’t until around 18 months old that we noticed she wasn’t hitting some of the same developmental milestones other babies her age were hitting – not responding to her name, hardly any eye contact, only one or two words like ‘mama’ and ‘dada’, but not directed towards us.  I was in complete denial at first.  No way.  Everything is fine, she’s only a year old.  Deep breath…

At her 2-year check-up, we told her pediatrician about our concerns: still no eye contact or responding to her name, no real words, not labeling her body parts.  She assured us that it was probably just a speech delay, and said to contact Early Intervention (EI), which is a State-run service that helps babies and toddlers (up to three years old) with developmental delays/disabilities.  I made the call the very next day & the process began.  Countless evaluations later, the services started, and she was receiving occupational and developmental therapy twice a week.  A few months into EI, one of her therapists suggested that we take her to a Neurodevelopmental pediatrician.  By this point, I had done my homework, and knew that this was the doctor who could give the autism diagnosis…but, we were still in denial.  To make things even more exciting, I was pregnant with my son at the time, and close to my October due date, so we made the appointment for January 19, 2010.  I can’t tell you enough how much I was DREADING this appointment.

January 19th came, and we prepared ourselves as best we could to hear the “A” word, or so we thought.  We’re good, right? We got this. We arrived at the office, where the doctor greeted us, and had five toys laid out on the floor.  She then spent the entire session observing how Bean played with the toys, and trying to interact with her. She also asked us a ton of questions about her development, and day-to-day behavior.  I was so nervous every time I saw her jot a note down on her clipboard, that I felt nauseated.  Once she was done with her observation, and finished with her notes, she looked at us and said, “Based on my observations, I am diagnosing her with an autism spectrum disorder.”  The room started spinning, and I could feel the tears welling up in my eyes, and a lump in the back of my throat. Did she just say AUTISM SPECTRUM DISORDER?! I mean, I figured that would be the diagnosis, but to actually hear it was something that I guess I wasn’t prepared for.  The doctor started laying pamphlets down in front of us for autism support groups, and various other information with the infamous puzzle piece on them.  I was in shock.  Is this really happening to us?  To our baby??

We left the office, and I could barely speak (which most people know doesn’t happen often).  As soon as I got to the car I broke down.  It sounds weird to say, but I almost felt like I was mourning the loss of a child, when in reality, we had our beautiful, healthy, perfect little girl right in the back seat, totally happy and content.  It is the hardest feeling to try to explain.

As soon as we got home, I went right online and began researching anything and everything I could get my hands on regarding autism.  I spent hours trying to find out as much information as I could, to try to digest it.  Ok, I’m good now.  WRONG.  I was a complete mess.  I would start talking about it to my husband, or my parents and break down in tears.  I could barely get through a sentence without getting upset. My mind was racing, what about her baby brother, is this something we’ll have to worry about with him?? Deep breath…

As time passed, and I learned more about autism, I came across so much negativity.  Parents saying “my child has autism, so he won’t do this, or can’t do that.”  How do they know?  Why would any parent resign their child to a life of “won’t’s” or “can’t’s”?!  It was from that point on that I decided that I only wanted to embrace the positive side of autism, the hopeful side, the accepting side.  We never want our girl to feel like there is something “wrong” with her because she is autistic, we want her to embrace it!  She is perfect to us, and doesn’t need “fixing.”

It took us about a year to really be comfortable telling people about her diagnosis, not because we were ashamed, but because we didn’t want her to be treated differently.  We didn’t want the label of autism to be the first thing people thought of when they heard her name.  She is so much more than that, autism is just a part of her, and it doesn’t define who she is. We wanted people to understand that autism is just a different way of thinking, learning and viewing the world.

Once she turned three and aged-out of Early Intervention, we immediately enrolled her in the Preschool Disabled program in our local school district.  Her birthday is May 1st, so she was able to start in the extended school year (ESY), and immediately began receiving all the therapies that she needed: speech, OT & PT.  Side note: I can’t tell you how much I recommend enrolling autistic children in preschool as soon as possible.  See if your school district offers ESY. Once you get them into the preschool program, they will develop an IEP (Individualized Education Program) for them, based on their needs and the goals that you have for them.  You are the best advocate for your child.

The bottom line is, Bean is still Bean, she just happens to have autism, just like someone with bad vision happens to wear glasses. Autism doesn’t define who she is, and it makes her unique in so many ways. We are so proud of her because we know how hard she has worked, and how far she has come. Don’t get me wrong, we have our bad days where it’s hard to see the light at the end of the tunnel, just like anybody else, but the good days certainly outweigh the bad.

 

-Brandy Pavia

Brandy Pavia is a working mom from New Jersey, with two amazing kids: an autistically awesome daughter, “Bean” & an adorably sweet son, “Bear.” Together with her husband, and their dog, Penny, (who is like one of their kids), she enjoys sharing her family’s adventures and encouraging others to embrace autism along the way!