Enter E.C.I.

Here I am…a very organized disaster.  On the surface things were going well. I was concerned about my son but no one knew that I had really hit the “PANIC” button in my mind. Miles was scheduled for his 18 month check up at his pediatrician; I was determined to get to the bottom of this “odd” and obvious developmentally inappropriate behavior he had been displaying over the past four months.

We went to the appointment (both kids in tow) like any other doting parents would do. Miles was extremely hyper that day (as he was most days during this period in our lives) but also in a GREAT mood. The doctor checked his physical wellness and his growth and development was stellar according to her. Now it was my turn for any questions I had about this new and exciting stage in our lives; we were entering into “toddler-hood” which is a far cry from being an infant and supposedly going to be “way better.” I mentioned that he did not respond to his name and I was concerned about his lack of speech. I clearly reported at his 12 month visit that he was saying a few words: ball, dog, mama, dada, all done. I told the pediatrician that not only did Miles not pick up any new words, but the words he once knew, he was no longer saying. To this she reassured me that he was probably working on other developmental skills and that the speech would return and it was not cause for concern. She went on to explain that boys tend to reach physical milestones first and pick up the verbal/language skills later on. Oh no worries from her at all. Speech was fine (I look back on this and wish I had the knowledge and guts to scream at her NO THIS IS NOT RIGHT!). Instead, I sat and nodded while my toddler ran from one wall in the patient room to the other, jumping in between of course.

I also touched on his hyperactivity and the fact that he NEVER sat still. He jumped for hours at night in his crib before falling asleep. He ran back and forth in our living room all day long. He never took a break to play with toys or balls or even to see what the rest of his family was doing. HE. JUST. RAN. ALL the time. Like an attentive doctor, she listened and nodded and asked if he was imitating us. (RED FLAG!!) No, I reported. He was not imitating us. He showed no knowledge of “hi” or “bye bye” or even where he was. HE. JUST. RAN.

I could tell the doctor was thinking. She was still confident that Miles was “normal” and that I was overly concerned and that he was just an active, happy-go-lucky boy with a nut for a mother. She could tell I was uneasy with her lack of concern so she went to get a test (to this day I cannot remember the name of it), more like a check list of red flags for diagnosing autism (this is the first time this word was spoken in relation to Miles). We went through the questionnaire with her and determined that Miles had only three “red flags” out of a possible ten for ASD (Autism Spectrum Disorders).  Nothing to be worried about according to her. Luckily for us, Miles had a slight fever that day so he did not recieve his 18 month shots. To this day we have not vaccinated Miles since he was 12 months old; he will not be vaccinated again- a discussion I will postpone until later on in this blogging journey of mine.

We left the doctor that day with a false sense of relief. The more days that passed, the less trusting I became of the doctor’s diagnosis. It was the first week in September, on my conference period at work I picked up the phone and called the number for ECI (Early Childhood Intervention). I explained that I felt my 20 month old had significant delays and I wanted an assessment. They sent someone out the following week. Miles tested at a 9 month level for almost all skills (communication, language, adaptive, fine motor, etc.)  The only skill he was developmentally caught up on was his physical development (walking, running, jumping).  I was relieved that they had agreed with my belief he was delayed. Miles was set to receive speech therapy, occupational therapy, and a case worker from ECI. I was very pleased (at first).  This, I thought, would be the fix-all solution to everything. They were going to help Miles and fix this glitch in his development. Boy oh boy was I wrong.

Something Is Wrong

Forgive me for back tracking– in my last post I briefly touched on the day of the diagnosis, I’m going to take you back to the process in which this came about. You would think with all the notoriety autism has received in the past ten, even in the past five years,  diagnosing your child with autism would be somewhat simple. Turns out, the exact opposite is true.  I also want to be clear that the “complaints” and detail which I re-tell this story with are not for pity or self-indulgence. I am very aware that there are far worse things in this world than an autism diagnosis. I also respect the struggles of those who came before me. Before autism was part of every day vocabulary, when children were diagnosed with schizophrenia instead of autism because back then, autism did not exist in the mind of any doctor; I will never understand what those mothers went through and how painful their experiences had to have been. I want to retell this story for myself. I already find myself blocking out bits and pieces of Miles’ journey and that, to me, is not acceptable. This little boy given to me was no accident and I fully intend to share his story with the world because it is the story of so many others out there.

 

The months after Miles regressed seem like a blur. I am going to do my best to accurately recall the hell we endured, however, I admit some parts are fuzzy and others may be totally forgotten.  Not only had we just moved into a new house, had two babies under the age of two, but I had switched schools and this next school year was about to be my worst. It was July 2009.  Miles and Cameran were 19 months and 9 months old respectively. That alone (as most mothers would agree) is enough to send any sane person over the edge. Miles was not talking, imitating, pointing, gesturing, or doing anything typical. He did not play with toys, instead he ran tirelessly from one end of the living room to the next. He would touch the wall each time he got to the end and jump continuously in between running. Most people just wrote him off as an adorable little boy with so much energy! I casually mentioned to a few of my close friends that something seemed “odd.” My main concern was his talking, I would tell everyone; though deep down my main concern was that he acted like he didn’t even know anyone else existed! I couldn’t play with my son-he didn’t want to play only jump and run. He never responded to his name. I tried to convince myself that this was how Miles always was. He was just an active boy who cared more about running around than looking at other people.

Until one day when I was going through old photos and videos of my babies. Cameran came into our lives so quickly after Miles that I had a hard time remembering her milestones. I had always written Miles’ down but wanted to be accurate with hers as well. So I am looking through photos on our digital camera and I stumbled upon a video of Miles in the bathtub at 8 months old. (I must admit even as I am typing this I am getting emotional- I think this is what sealed the deal for me). Miles was in the bathtub splashing so gaily trying to pick up the rubber ducky in front of him. To anyone else this looked like a typical home video of a sweet baby boy playing. But then I heard my own voice say “MILES!” and my baby boy looked up at me and smiled. I said his name 4 different times in that video and every single time, he looked up to his name. Why was it that now at 19 months of age, could Miles not respond to his name?  I remember curling up in a ball on my closet floor sobbing. It was almost unbearable to think but it was true… Something was wrong- not maybe- something was definitely wrong. Now I just had to find someone who believed me.

 

He’s not Austim, He’s my Brother. Miles’ story from the beginning

He’s not Austim, He’s my Brother. Miles’ story from the beginning

by Nicole Roberson on Saturday, June 25, 2011 at 4:55am

I cannot say I remember the exact moment that my world unraveled. It was more like a slow process; like bread that slowly begins to mold after being unused for too long.  Like the bread the “mold” in my world started to grow steadily but not too fast. You couldn’t tell day to day that drastic changes were taking place. They were very subtle. Then before we knew it, the “bread” of our lives was completely suffocated with mold.

I am NOT comparing autism to mold. However, the process in which autism took over our lives (we have since taken the control back) is very similar to the way the mold conquers the bread. Nor am I saying I cannot remember perhaps one of the most pivotal moments in our lives. I remember every iota of feeling, emotion, and physical events of the day Miles was diagnosed with Pervasive Development Disorder (six months later this changed to Autism). I remember the dingy white v-neck shirt I wore to Child Study Center. I remember the dear social worker, Holly, whom I befriended, who sat with my husband and I while we wept.  I remember Miles being so blissfully unaware of what was happening. He just ran back and forth tirelessly in the exam room while we listened to the doctor tell us what in my heart I can honestly say I already knew.  I cannot, though, recall the date that my first child, my baby boy, seemed to have “left” us in every sense of the word.

Let me reiterate, there was a gradual shift in the demeanor of my baby boy. His lack of interest in his baby sister was “normal” due to his age (only 10 months at the time of her birth). However, as the months passed, Miles NEVER seemed to even notice she was there. He never looked when you said “baby” or even seemed to notice she was laying next to him. Also, for a child who loved books and a mommy who loved to read to him, he couldn’t recognize simple pictures in the books. At 15 months he still couldn’t point to a “ball” in the picture- even after I modeled it first. All odd things, yes, but were they cause for concern? The more concern I raised with family members and his pediatrician, the more I was put at ease (temporarily). I was told not to hit the panic button, that his language would come, the imitation would come. Though at 18 months Miles was not imitating ANYTHING we did. No pretend talking on the telephone, no waving, no words of any kind. But I could go back in my head to a time (around 13 months old) when Miles would say “ball” “dog” and my favorite “all done.” When feeling doubtful about the reassurance from the doctor I would just remind myself that he DID talk so he eventually would just start talking again. Of course, it didn’t happen like that.

The little boy who once laughed hysterically while I chased him around the house and played peek-a-boo with had basically vanished. Except for his physical presence, Miles was gone.