I have deliberately blanked out the name of this 6 month old.  The story is not written by me,
but it could have been.  All of us have heard dire predictions about our children.
Just fill in the name of your loved one.  And never, never, never give up.

    I can assure you it gets better. Never go by what the doctors tell you. Instead, look at what your child shows you. After MRI and CT scans, we were told our ________ suffered from hypoxic ischemia (I've come to hate to say this term), when he was only about a week old. He was on a ventilator at the time.  We were told he would never breathe on his own, never eat orally or swallow his own secretions. The doctors said that he would most likely be blind and would probably never recognize us; that he would most likely never be able to sit up or even hold up his head. He would never smile, cry or talk.  They painted a very grave prognosis for _______'s life.  We made the painful decision to take him off the ventilator.  And to everyone's amazement, he kept right on breathing.  He is six months now, they told us he wouldn't live past three. The new version is that he will thrive!  Needless to say, I have not been back to see the doctor who gave us his first prognosis.  His neurologist saw him this week for the first time since we got him off the phenobarbital.  He was actually amazed it was the same little boy he'd seen 3 months ago. At that time he said he had bet ________ would be mentally retarded to some degree, but now is not so sure. ________'s vision and hearing were tested this week also and both were great!!  He's now cooing and smiling.  He rolls over and can hold head up and we're working on sitting!  The therapist believes he'll be able to do this on his own.  He's working switch toys already and figuring out cause and effect. It shows you that with a lot of Love and some early intervention, things can really turn around.  Hang in there.  I thank God everyday that I have ________ in our family .

 A friend recently sent me  an article written 20 years ago by Seymour Sarason.
It is really timeless.  Here are some snipets, as it is long:

"I have been given a lot of facts.  I know what x-rays of the brain showed. I know that the neurological examination shows indisputable signs of central nervous system dysfunction.  And I know that behaviorally and psychologically, Keith is far behind other children his age.  Each of you specialists  has done your thing and you are telling me the way things are as you see them by virtue of your techniques.  But is a diagnosis a collection of facts?  Does your responsibility end when you have given me the technical facts?  It may be a fact that on the basis of your techniques Keith's develomental quotient is around 50.  That is a technical fact, and you pin labels on him:  brain injured, seriously retarded, etc.  But isn't the sole purpose in employing your techniques to determine the universe of possibilities that should be considered in an effort to improve his condition?  I have gotten no concrete suggestions at all and nobody seems to want to experiment.  Is it that hopeless?  Or is it that you have neither the courage or imagination to try new things?  Do you know so much about cases like Keith that you can write him off as hopeless?  There is a big difference between the facts and the truth, and you have only given me the facts.  You seem unable to test the validity of the conclusions you have drawn from your facts.  You have only done half of your job, the technical part, the easy part.  You stop where I as a parent want you to proceed. Specifically, concretely, in detail, what should we do or try?".... " Diagnosis is more than description, test scores, and labels, and in conceding the argument to Keith's father these clinicians are only reflecting what is obvious:  Diagnosis is a socially sanctioned and valued process precisely because its goal is to be helpful.  It is more than exercise in technique and fact finding....The people who saw him were not incompetent.  Even if Keith's later develoment had been in line with predictions, we still would be justified in emphasizing the difference between diagnosis as fact finding, on the one hand, and diagnosis as fact finding leading to intended helpful actions, on the other hand.  Because we do not know how to be helpful says as much about us as it does about the retarded person."  ---Seymour Sarason

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Updated Sunday, January 27, 2002