Saturday, November 13, 2010

"The DIAGNOSIS" part 1

Yes, it must be written in capitals.  How to possibly label and emphasize something so simple yet  life changing?  It's just science.  A change on an single gene, carried by my own X chromosome, causing an increase in repeats, causing a change in protein production. Fragile X.  My own fragility caused frailty in my son, how to possibly bear the guilt that something inside me lay so dormant, so dangerous?  X marks the spot.
Owen was born a healthy robust boy on July 25th 2008 via C-section.  At 9.11 lbs, he was a big ass baby.  Within a few days - hours, even, I noticed differences from he vs.  his older sister, B.  Sure, they tell you not to compare your kids, but it's only natural!  B was wide eyed and alert from the get go, whereas O was quiet and had his eyes closed most of the time for about the first month of his life.  However, he ate regularly, spit up a little more than normal, and preferred sleeping in his car seat at night.  He usually woke one time of night for a feed.   When I brought up my 'lack of eyes open' concern to our pediatrician, he asked "Does he have periods of alertness during the day?" Well, yes, he does, so 'don't worry about it.' I still worried, thinking maybe the c-section was too soon and he wasn't completely neurologically developed.
When ) was 8 months old in March of 09, his daycare teachers expressed concern.  He still wasn't sitting up on his own, and they were concerned.  These were the same women who had my daughter, and many of these teachers have worked in the infant/toddler room for 7+ to 10 +years, and I could see the look of concern in their eyes.  It scared the shit out of me. 
I cried hysterically on my way to work that day, as I would for many more days to come.  It wasn't just mother's anxiety, someone else noticed, people who KNEW babies and had significant experience caretaking them.  Immediately I called my pediatrician who recommended we call Early Intervention (EI).  Within a week they came to my house and evaluated Owen. (All EI evaluations are done by at least 2 staff, and preferably 3).  He tested in the 4-5 month range as an almost 9 month old. I was panicked.
By the summer, Owen was both creeping and talking his first words, although it took him until he was 11  months old to crawl correctly.  His evaluation by EI in Sept of 09 concluded he was around the 12 month level, almost walking, using his first words, and overall doing much better.  I asked the visiting EI worker point blank "Is he retarded?" he replied laughingly, "No!"  When I later repeated my concerns to our pediatrician, he told me "Nahh, he's just lazy."  Every professional I've told that story to since has looked at me, horrified.  "Babies aren't lazy!" is what they all say.  Babies will try to please you, they want to.  They aren't lazy.  At the time, I really wanted to believe the pediatrician.  But deep down I knew better.
By December O still wasn't walking.  He wasn't using the words that he had the initially started speaking, and had become more of a yell/grunter.  I requested a speech eval through Early Intervention.  The speech pathologist came with our regular EI worker, met with us for an hour, and at the end looked at me and said earnestly "He is either autistic or globally delayed." Ringing in my ears started.  "What? What do you mean?" My kid LOVED people. How many times had I heard "He's so happy! What a great smile! What a happy baby!"  He makes friends everywhere we go!  Autistic? As her lips kept moving, something dawned on me "Global delay? Does that mean mental retardation?"  She whispered conspiratorially "We're not allowed to say that anymore, but yes." And then the only words going through my head were "Get the fuck out of my house. Get out. Get the fuck out."   She recommended a developmental evaluation at UMass or Children's Hospital, looked at me with pity, apologized, and got the fuck out of my house.
That was December 11, 2009.  Since then, I don't remember many other 'big dates' regarding the diagnosis, but that is one that will always stay with me.  The day someone told me the truth.

1 comment:

  1. My son is autistic. we found it out last year. till now we are still in therapy but am not getting a serious results out of it! i'm sinking in this and feels guilty all the time asking myself if am not doing anaugh for him and what can i do more to help him be fine.
    i am desperate.
    if you have any advice please email me at


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