EP Special Needs Connect

Just wanted to share our story, in the hopes that it might help someone new to the autism adventure…you are not alone 🙂

Our Story…
Posted on May 14, 2011 by Jumping Bean’s Adventures in Autism

Once upon a time

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 world got turned upside down. That was the day our baby girl got diagnosed with the dreaded “A” word…autism.

We noticed at around 18 months old 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 1 or 2 “words” like mama, dada & not directed towards us. I was in complete denial at first – no way, not my baby.

At her 2-year check-up we told her pediatrician about our concerns & she immediately told us to call Early Intervention (EI), that it was probably just a speech delay. I made the call the very next day & the process began. Countless evaluations later, the services started, and she was receiving occupational & developmental therapy twice a week. (I should add that EI ends when the child hits 3 yrs old). A few months into EI, one of her therapists suggested that we take her to a neurodevelopmental pediatrician, which I dreaded, because I knew that was the doctor who could give the autism diagnosis. I was pregnant with my son at the time, and close to my October due date, so I made the appointment for January 19th. 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 got into the office & the neurodevelopmental pediatrician had 5 or 6 toys laid out on the floor, and spent the entire session observing how Bean played with the toys, while asking me a ton of questions. 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, she looked at us and said, “from my observations, I would diagnose her with an autism spectrum disorder.” All my so-called “preparedness” went out the window & I could feel the tears welling up in my eyes, and a lump in the back of my throat. The doctor started laying pamplets 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 & 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 baby 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 & started 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. And now we have her baby brother – is this something we’ll have to worry about with him?? My mind was racing all the time.

As time passed, and I researched more, I came across so many websites with 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”?! Give these kids a chance! After that, I realized that I only wanted to see 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 me about a year to really be comfortable telling people about her diagnosis, not because I was ashamed, but because I was afraid that she would be treated differently. I 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, it doesn’t define who she is. Once I really learned about it & let everything marinade in my head, I realized how much I wanted people to understand that autism is just a different way of thinking, learning and viewing the world.

Once she turned 3 and aged-out of Early Intervention, we immediately put 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) & immediately get all of the therapies that she needed: speech, OT & PT. I can’t tell you how much I recommend putting autistic children in preschool as soon as possible. See if your school district offers the 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.

Currently, Bean is in first grade. We have been so fortunate to have an amazing group of teachers/paraprofessionals/therapists working with her, and helping her make such amazing progress. She is putting 3-4-5 words together, and can tell us what she wants! Conversation is still prompted, but we know that in time, it will come! She is so smart, and loves playing with, (and torturing) her little brother!

The bottom line is, Bean is still Bean, she just happens to have autism. Just like someone with bad vision happens to wear glasses. It 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 certainly have our bad days, or days where it seems like there’s no light at the end of the tunnel just like everybody else, but the good days totally outweigh the bad. ♥