The Importance of Tangible Positivity

I have been slowly reading through a book entitled "Understanding Down Syndrome - An Introduction for Parents" by Cliff Cunningham.  A section in the Preface really resonated with me.

Friends have tried to reassure me that all of us as parents will worry about our children... and yet I couldn't explain how I felt having a child with Special Needs brought a different aspect of worry.  When I ran across these two paragraphs I then realized it explained where I see the difference.


"If a baby is born and appears quite normal, we parents are not given a catalogue of information about the risks of what might go wrong in the future.  We are not told about the chances that a heart condition, hearing problem, visual defect, personality disorder and so on might appear.  We are not given a lists of statistics about the risk of delinquency, drug abuse or success at school or work.  We go home and dream our dreams for a happy future.  If we were given such a list, we would need to learn to live with the information and control our imaginings of what might happen.


But if you have a baby born with a condition like Down Syndrome, which is recognizable from birth or shortly after, then many facts and figures are available.  Much of this information is about possible medical and developmental problems and about how they can be helped.  But the majority of children with Down Syndrome do not have many of these problems." 


Shortly after Eric's birth, there was a suspicion of Down Syndrome because of some of the characteristics Eric presented: extra fold of skin around the inner corners of his eyes, small to no bridge of the nose, wider space between the big toe and the rest of the little piggies... When it was confirmed a packet of papers was thrust upon Jason.  I haven't seen them to this day because Jason is protecting me from the utter despair of the diagnosis presented in those papers.

I don't recall any of the medical staff talking to me about the diagnosis beyond that was what my son had. How EXTREMELY vital it is to have POSITIVE information, feedback, reassurance that Down Syndrome is NOT LIKELY to be as horrible as medical information presents.  It has taken me a very long time (seven months) to come out from under the covers of "what if?" and just now feel like I am able to have a balanced perspective about the information I receive.

Now that there is earlier and earlier pre-natal testing for Down Syndrome no wonder the abortion rate is at least 90 percent  (not all positives being correct) with such dire information and statistics.

I have also recently read of an adoptive couple walking a way from adopting a baby because the baby had been born with Down Syndrome.  I wonder how many times this has happened?

I also wonder how many babies are given up for adoption when their baby tests positive for Down Syndrome just because the parents don't think  they can "handle" a child with "special needs".

I wonder how many lives have been ended or changed because of the lack of positive information about Down Syndrome?

As much as I TRULY appreciated all the remarks about how people with Down Syndrome are cheery people and enrich the lives of those around them and so forth, I also needed to hear that there are so many efforts being made to uplift and enable babies, children, teenager, adults with Down Syndrome. Sure, there will be struggles and it is good to be prepared for them. But it is also good to know there are tangible resources to help people with Down Syndrome live up to their fullest potential - which quite frankly is higher than we might realize.