Our story begins like so many others. When our twins were 2 years old, we began to notice distinct differences in their development. Blake was always about a month ahead of Bella when reaching milestones. Around age 2, Blake began speaking in sentences and Bella could only name and label. People said, “Oh, Blake is talking for Bella” and “She doesn’t need to ask for stuff because her brother does it for her.” I began to believe the excuses and managed to go 6 more months before realizing that Bella wasn’t talking.
Around that time, her behaviors started to reach a boiling point. I could put her in time out and she would cry and cry and immediately go back to what she was doing. There was no comprehension of “cause and effect”. I finally made the call and got her in to see a speech therapist. During that first visit, the therapist noticed that Bella would pause while playing and stare off at nothing…the wall, a pencil, a crayon. She would stare for several seconds and then go back to whatever she was doing. The therapist said that the staring spells might be brief seizures and that we should see a neurologist. I managed to get an appointment with a pediatric neurologist for ASAP (only after I called the pediatrician and expressed my frustration since I had been telling him all my concerns and he had blown each one off. He contacted a neurologist and got us the appointment.)
My husband and I took her to the appointment fully believing that seizures were the cause of all of our concerns. Dr. X came into the sterile room which had not one toy. (Seriously? You make a living seeing kids and your exam room has not one toy?) Bella was not happy about our visit and clung to me. Dr. X looked at my baby girl and barely acknowledged her or us. After several long minutes he announced that he could confidently rule out a seizure disorder and that he was sure she had autism. I dissolved into a puddle of tears. Dr. X looked at me and said he was sorry, but he didn’t have Kleenex. (Where did this guy graduate from – Auschwitz School of Compassion?) He suggested we schedule an EEG to rule out seizures completely. Dr. X said we could get a second opinion, but he was pretty sure he was right. (Guess who got an appointment for a second opinion?)
That very first day is D-Day – Diagnosis Day. Monday, January 8, 2001 was the day that everything changed for us. So much changed on that one single day. In the days that followed, I felt incredibly alone. I would wake up in the middle of the night sobbing uncontrollably. I spent hours on the internet (the one thing Dr. X had said not to do…ok, so he was right.)
I took my girl for our second opinion where I was sure this much more intelligent and, more importantly, female doctor would tell us Dr. X was so very wrong. And she did. She said Bella did not have autism. Bella had PDD-NOS. I was so happy! I couldn’t wait to call Dr. X’s office and give him a piece of my mind! I got home from that appointment and immediately rushed to the computer to get more details about PDD-NOS (surely this was a diagnosis for very smart children who were late talkers, non conformers and resistant to change…). So, I googled it. Big mistake. Huge. I very quickly realized that PDD-NOS was an Autism Spectrum Disorder.