Suspecting something wasn't quite right

Sometimes people ask me which of my twins was the first to say a word and are shocked when I tell them that Christina was. Between 8 and 9 months of age, Christina spoke her first word - she said "Dada". Not long after that, she was saying "Mama", "Kiki" (Cat), "Hi", "Bye", etc. She was a happy baby. She loved to be held, tickled, and talked to. She would look me in the eyes and smile at me. I have videos of her babbling to the camera and just giggling away. I often sit and wonder what the heck happened. It seems like a blur to me. I have to look back at pictures and see old videos of Christina to remember what she used to be like.


Christina crawled much later than Andrew and walked a couple of months later than him too. Andrew was an active little guy when I was pregnant, as a newborn and still hasn't stopped - so this meant nothing to me. Between 18-22 months, something changed for Christina. She stopped saying the words that she had learned, she was very irritable, and actually appeared to be regressing. I did "wait it out" for a couple of months and I will never ever forgive myself for that. I figured that since she crawled and walked later, that she would take off talking more in no time. It became very apparent to me that I had to do something. When Andrew started to put 2-3 words together and could express his needs to me and all Christina could do was cry until I figured out what she wanted, I knew I had to do something. What makes me frustrated is that I had expressed concerns to her pediatrician at the time and I was told "she will catch up". I am becoming one who believes that vaccinations play a part in the onset of Autism. I recently looked at the dates on her shot record, and sure enough she had a whole set of vaccinations at her 18-month check up. This is around the time I noticed something wasn't right. 


At around 22 months, I finally convinced her pediatrician to make a speech-language referral. I also switched pediatricians immediately. I knew I couldn't keep a Doctor who didn't have my child's best interest at heart. I shouldn't have been forced to fight for a speech assessment. So, Christina became a patient of Developmental Pediatrician, Dr. Hurwtiz. She was assessed and was only speaking and understanding the language of a 6-month old baby. I was devastated, in shock, hurt... The speech pathologist recommended that she see a pediatric neurologist and that I contact the Regional Center. I remember thinking what the heck is a Regional Center? Well, the Regional Center is what has opened so many doors for my baby girl. At 23 months old, Christina was receiving speech therapy and a teacher contracted through Regional Center was working with her in the home. 


When we finally were able to see the neurologist, she was 25 months old. An EEG was ordered to monitor Christina's brain waves over a 24-hour period. The neurologist was looking for signs of Landau-Kleffner Syndrome (I'll explain in a future blog). I was also told that she most definitely falls on the Autism Spectrum. In fact, her check out sheet that day said "Autism, current or present". I was sent with lab slips for her to get tested for certain genetic disorders as well. I left Rady Children's Hospital that day feeling like I had just been punched in the stomach. I had to pull the car over a couple of times because I could not see the road with all of the tears rolling down my face. I kept looking in the rear view mirror at my precious baby girl thinking in my mind that I somehow did this to her. The guilt I felt is indescribable.


I was definitely not prepared to be told that my child displayed characteristics of Autism. Denial set in, full force. I was not ready for what was ahead of us. I don't think anyone can be prepared to be told that their child has Autism.