Awareness

I have a soft spot for children with Down syndrome.  I entered the world of special needs when I started researching Ds.   As a woman going through pregnancy and childbirth after age 40, I had to consider what I would do if I got that diagnosis.  I realized not only that I would welcome that child no matter what, but that Down syndrome is far from the horrible fate that "common knowledge" would have you believe.  There is a good reason for that.  Medical progress has effected huge gains in both longevity and quality of life for people with Down syndrome.  Back in the 60's, when children with Ds were routinely institutionalized with little or no medical care, their life expectancy was in the teens -- much as it is in Eastern European institutions today.  In the 70's these institutions were gradually phased out, as advocacy for people with disabilities gained ground in public policy in this country.  By the time I was a teenager in the 80's, a child born with Ds could expect to live into the 20's.   Today, the same child could expect to live to 50 or 60 years old.  He or she has the potential to graduate high school, hold a job, get married, and be a full member of society.  But most people's opinion of Down syndrome was formed based on information that is outdated and getting more so every day.  The fact that prenatal testing encourages many pregnant women to abort their babies with Down syndrome means that we have fewer people among us who can dispel this misinformation.  And so it goes.

This week several people blogged about another special need where people's knowledge seems stuck in the 80's.  Back in the 80's, HIV was a big, scary deal.  If you had it, it would probably develop into AIDS, and your prognosis was very poor, indeed.  Then, in the 90's, anti-retroviral drugs were developed, and as those became cheaper and more widespread, we stopped hearing about HIV in the news.  It was just not a big deal anymore, unless you lived the kind of lifestyle where you were not likely to avail yourself of medical help (e.g. drugs and prostitution).  Since these drugs became available, children who had been infected either through birth or through blood transfusions were able to lead completely normal lives.  Since the 1990's, there have been NO cases of HIV transmission within families, or through schools and other casual interactions.  The drugs are covered by most insurance policies, and copays are manageable.

In Eastern Europe, however, HIV infection rates are growing rapidly, as awareness of risky behaviors has not kept pace with the USA.   Infected children form a sizeable population in the orphanages.  While they are wards of the state, they generally do get access to the needed medication.  When they age out at about 16 years old, however, they often find themselves on the street, and the cycle repeats.  Adopting children with HIV is very manageable!  Except for the medication and the occasional extra check-up, they can look forward to everything that any other child does, and their future has limitless possibilities.