Hell, Meet the Robersons…

We jumped through many many many hoops- as all autism moms do- to get to where we are today. I wish I could tell you that my description of these events is going to be accurate, but my memory escapes me. Not because I’m old but because I honestly think the trauma of it all has been locked away so tight in my brain that I can never think hard enough to access it. It was literally a blur. This will surely be my most unorganized blog yet because most of my memories are pieces and events that never really sequence together. Thus, this blog will sound a lot like unfinished stories/thoughts/events because that’s how it plays out in my mind.

It is November 2009 and it was my first worst Thanksgiving (I say first because there was a second a year later). It wasn’t horrible because of drama, it was horrible because I realized how fast time was running out. Another year was almost over and  I had an almost two year old who was completely absent from life. The main issue that always stuck out was the fact that he was non verbal, though there were so many other issues. Many children don’t speak until the age of two or three even and are totally neuro-typical. This was not the case with us. Miles was totally unengaged with life. He had no idea who I was or that he even had a sister. Further more people (and I at some points) kept holding on to the idea that he was just a late bloomer.

I filled out the paper work for Child Study Center and waited for my response letter. In the mean time I spent HOURS, literally HOURS on the phone with the insurance company. Attempting to find Miles a private speech therapist and occupational therapists. Well, I learned too many lessons during this point in time and it has turned me into quite the bitter person when it comes to finding services. First of all, NO insurance company will cover anything without a diagnosis (which at this point we did not have). Second of all, almost all private speech and OT services are for people on Medicaid (which we did not qualify for).  Third, once you find an in network provider, in your area, in your price range (IMPOSSIBLE), then you have to be put on their waiting lists (usually longer than 6 months). I called over 35 “local” therapy centers and was turned away for one or all of the reasons above. I felt HELPLESS. I knew Miles needed speech and I knew he needed occupational therapy but now it seemed in a world full of therapies I COULD NOT FIND ANYONE to help. The stress of explaining our situation over and over and over on the phone was enough to break me down on a daily basis.

We even went so far as to get a private OT evaluation from a wonderful OT (paid a fortune for the evaluation….just saying!) just to find out that she did not accept anyone who was not on Medicaid or CHIPs which again WE DID NOT QUALIFY! The frustration level was so consuming I honestly don’t know how I made it through work or life during these months. It was all autopilot, I have no real memories of my kids or life during this time- it was truly an out of body experience.

Through the phone calls and denied claims and cries for help, we learned that we needed to get a hearing test so that Child Study could rule out hearing loss as a reason for Miles being non verbal. First we find a pediatric ENT (ear, nose and throat doctor), make the impossible appointment and go. Only to find what we already knew, Miles screamed the ENTIRE time. He would not let the doctor examine him without being restrained by me, a nurse, and the doctor. He would NOT wear headphones or allow ANYTHING to touch his year. So we tried sticking him in a sound booth and calling his name…he screamed until I was able to sit in the booth with him. Once we did that, someone else finally got to see what I saw. Here we sit in this sound booth, the doctor says his name over and over from all angles: “Miles, MILES, MILES!” And NOTHING! Not even an indication that someone was talking. The doctor even asked me what name does he go by because he doesn’t seem to know his name is Miles, I replied, “he doesn’t respond to ANYTHING, that’s why we are here.” Needless to say I was given the evil eye by every employee and parent in that office due to my child’s lack of compliance and disruptive behavior…. cried the whole way home (me that is).

With the non results at the ENT we really really needed to get Miles’ hearing tested so we were put on a list to go to Cook Children’s Hospital and have a sedated hearing test. Miles would have to undergo general anesthesia and be admitted to the hospital. Another day for the history books, this is truly when the word HELL had a whole new meaning. To undergo anesthesia Miles could not eat past 4AM the morning of the test. So I wake up with him at 4 and fee him his last meal for the day. We arrive at the hospital only to be greeted with waiting, waiting, and more waiting. If anyone reading this knows Miles you know that to this day, waiting is one of the HARDEST things in our life…well during this time it was impossible. Miles screamed and kicked, and cried, and threw himself on the floor ALL DAY LONG. We moved from waiting room to waiting room, unit to unit… all carrying a screaming child (and of course with the whole world watching our “bad’ parenting since we were unable to calm him down). We walked up and down the halls we tried carrying him, letting him walk, letting him play, reading, singing, YOU NAME IT WE TRIED IT. Miles cried and cried and cried. I remember laying with him on the FLOOR in the hospital room just rocking his sobbing body back and forth- tears coming down my face as well. This is HELL I thought, this is it.  Finally the anesthesiologist came in and they put Miles in a gown; I remember he screamed and fought so hard they were unable to get any type of blood pressure reading and after 20 minutes of trying the trained nurses and doctors actually said- we just can’t get a blood pressure reading- we will just have to start without it. They rolled him out on a stretcher, screaming and kicking (I stayed by his side). It took four nurses to hold this 23 month old boy down so they could put the mask on him…I watched his fight become weak and his screams stopped- he was finally knocked out, finally at peace for just a little while. Waiting was agonizing and after an hour or so they said we could come back to recovery to see him. I remember turning the corner in the hall and hearing Miles’ piercing screams– yep he was awake alright.

I went over the hearing test results a million times in my mind– maybe the doctors will say guess what, he’s FINE, he’s just deaf. Oh my gosh how I prayed for him to be deaf. I wished so badly that was the problem. But I  knew it wasn’t- Miles loved music and he ran to the TV anytime you turned it on (even if he was in a different room). Please please please let them say he is deaf …..The doctor came in, “great new, his hearing is fine.” Great news to any parent…any parent but me. This was all becoming a little too real. His hearing is fine…now comes the hard part.